Tag: NICE

Something Overlooked?

The last time I blogged here back in May, close to the start of the pandemic crisis, I wrote about the pending reassessment of the ME/CFS NICE guidelines and suggested that the chance of the recommendation of graded exercise treatment being withdrawn was only slender. Truth to tell, I really had no idea what the outcome would be. I could equally well have been more optimistic. But given i) the apparent weighting of the guidelines development group towards those of a biopsychosocial disposition and ii) years of seeing no sign of improvement in the establishment view of ME/CFS in spite of the growing weight of evidence that such a viewpoint was wrong, I decided to take a more cautious stance, at least partly out of sheer habit.

Well, to judge from the present draft amended guidelines, I’m pleased to say it looks as though I was overly cautious. Though they are only draft guidelines and therefore still liable to change, it looks as though common sense has finally triumphed, and GET for ME/CFS, sustained for years on little more than its devotees’ Trump-like refusal to face the facts, is finally on its way out. Knowing what we do of its supporters, it is likely to go round the revolving doors for several years yet before it finally disappears, but that may not be the least of our worries. There is also the troublesome problem of what to put in its place.

Somewhere over the rainbow, they say, there is a glorious place called Never-Neverland, where wonderful things happen. This is a place where the biopsychosocial cabal didn’t steal away all the research funds for themselves, where the biomedical research which was actually needed got done, some treatments were found to improve our health, and my wife and I and many of you who are reading this have been able to gather together the strings of some kind of normal life again. And if long COVID had come along to such a place, then yes, we might have had some idea of what to do about it.

But  Never-Neverland is not where we live of course. The stark reality of our own world is that many decades have been lost as time and money were squandered in pursuit of a psychiatrists’ pipe dream, and as a result, we are little nearer understanding what keeps our bodies stuck in a complex state of multi-systemic organic dysfunction.

‘Be aware there is no current treatment or cure (nonpharmacological or  pharmacological) for ME/CFS’ the new draft guidelines announce gloomily in paragraph 1.11.1, the opening part of the section on Managing ME/CFS. In accordance with this, they confine themselves largely to advice on a management program which has at its heart the technique which patients call “pacing“, an attempt to make some kind of life for ourselves while staying within our limited range of energy, having to suffer a wide range of unpleasant symptoms on all those occasions we inevitably get it wrong.

Pacing is invaluable but it is not – as they put it – ‘curative’ and it’s hard on patients to be offered little else after so much time. We are paying, of course, for all those decades of inaction. What else could NICE come up with when there is so little evidence available?

Is it possible, though, that something is being missed?

My wife Chris, who some of you may know through various Facebook forums, became ill with ME in 1980 following a bout of glandular fever (aka Epstein Barr virus) from which she never really recovered. Some new readers might relate to this situation better if I describe this illness as ‘long Epstein Barr’, though in this case ‘long’ has so far extended to mean the rest of her life.

After several years of confusion about why she was not getting better, Chris was eventually diagnosed with ME by the late Professor Peter Behan, a neurologist who was carrying out important research into the condition (including an investigation of the HPA axis dysfunction) and who wrote the introduction to the late Professor Melvin Ramsey’s  ground-breaking work on ME, ‘The Royal Free Disease’. Dr Charles  Shepherd of the ME Association said of Professor Behan: ’unlike most of his neurology colleagues he had no doubt that ME was a serious neurological illness and that the patients were being badly let down by both clinicians and the research community.’

For most of the many years of ME which followed, Chris would have described her condition as either ‘moderate’ or ‘the severe end of moderate’, but a few years ago, in the spring of 2017, over the space of just a few months, she became ‘severe’. Her heart rate began to rise alarmingly, and stayed high even when she was lying down, to such an extent that she was no longer able to sleep. She became utterly exhausted, more so than ever before. This was partly due directly to shortage of sleep and partly due to the energy she was having to expend in maintaining her excessive heart rate. As far as her body was concerned, it was running a marathon all the time. It was far from an ideal state of affairs for anyone, let alone a person with long-standing ME. This was the most ill she had ever been in all those years.

She was referred to a cardiologist, who prescribed medication which lowered her heart rate, though the latter remained excessive when lying down. He was unable to suggest any reason for what had happened, but a Fitbit confirmed that Chris’ heart rate varied with her posture, so from what she could find on the internet, it seemed very likely that she had developed POTS. This is short for ‘postural orthostatic tachycardia syndrome’, which in turn is caused by ‘dysautonomia’, a dysfunction of the autonomic nervous system (ANS).

It may seem surprising that it was Chris rather than a doctor who came up with this solution, but in fact it isn’t. As it says on the website of the national patient support group, PoTS UK, ‘many healthcare professionals do not know that PoTS exists.’

Chris was able to find a cardiologist in a neighbouring health authority who took an interest in PoTS, however, and he was able to give her a diagnosis and further medication to improve her heart rate, so she was finally able to get a better night’s sleep.  He also supplied the important information that many patients with PoTS also suffered with mast cell activation syndrome (MCAS), a little-known condition which is caused by the abnormal release of chemicals from within mast cells.

Mast cells are a normal part of our body’s immune system and these chemicals are normally released to help us fight infection. In MCAS, however, the chemicals are released inappropriately when the mast cells are stimulated, producing numerous inflammatory and immune symptoms. (Though MCAS is little known, there is another condition called mastocytosis, which is caused by too many mast cells in the body. This is better understood but is much less common than MCAS.)

Once again, Chris was lucky enough to find a consultant who took an interest in the condition, not exactly on our doorstop but within an accessible distance for travel. Chris had checked online and found that she had almost all of the symptoms of MCAS, so she was not surprised when the immunologist confirmed that she had the condition. Once again, she was given medication which helped the symptoms. Thinking back to the onset of the problem with her heart rate, it now seemed likely that this had been caused by MCAS: a histamine over-reaction to the high rape seed pollen levels there had been in the area at the time.

The PoTS UK site lists PoTS, MCAS, and also Ehlers-Danlos Syndrome (EDS/hypermobility spectrum disorder) as related conditions, and Chris has been told very recently by a rheumatologist that she is hyper-mobile, so she now has what her consultant has described as the ‘full house’ – although could it be that she should also add her long-standing diagnosis of ME to the same collection?

Chris is not alone in having ME plus one or more of these other conditions. The MCAS groups on Facebook are full of people who have been given a diagnosis of ME, while the PoTS groups on Facebook are full of people who have been given a diagnosis of MCAS and ME. In Chris’s case, taking two medications to help with her PoTS and three to help with her MCAS plus various supplements which also help MCAS has enabled her to achieve a quality of life which is better than that which she had three years ago before the sudden downturn. She counts herself particularly lucky to have been able to consult doctors who are so knowledgeable about PoTS and MCAS respectively. But from what she has heard on the Facebook groups, she knows that a great many other people with ME have also improved after being treated for these same co-morbid conditions. There must surely be other people who would also benefit if only they knew…

What exactly is going on here? How can we describe the relationship between ME and these other conditions? Are they indeed co-morbidities or is there in fact a closer relationship between them?

In March 2018, in Salt Lake City, a summit of doctors specialising in ME/CFS declared that ‘mast cell activation syndrome may be an overlooked yet potentially treatable contributor to the symptoms of ME/CFS’, and several attending doctors suggested that round about 50% of their ME/CFS patients had MCAS. Dr Susan Levine explained that if doctors could do something to help the mast cell problem, patients might be better able to tolerate drugs to treat ME/CFS.

Closer to home, the paediatrician Dr Nigel Speight, highly respected by patients in particular, recently contributed the following to a video on very severe ME/CFS: ‘more recently, we have become aware of a quite frightening condition called mast cell activation syndrome in which patients have severe reactions to foods to which they are intolerant based on histamine release… This is not a cardinal part of ME but it seems to be an added complication and it is responsive to treatment… so it’s very well worth knowing about.’ (From ‘A more detailed look at severe ME’ – ‘Dialogues for a Neglected Illness’ by Natalie Boulton and Josh Biggs – scroll down to the second video on the page, starts at about 9-00 in.)

‘Well worth knowing about’: those closing words from Dr Speight seem to sum the whole thing up. So shouldn’t mast cell activation at least be mentioned in the NICE Guidelines? As it stands, it doesn’t even appear. Neither does Ehlers Danlos Syndrome/Hypermobility. Of the three commonly encountered comorbidities featured in this post, only PoTS is mentioned in the draft guidelines (as one of the symptoms which is commonly experienced by the severely affected) – along with postural hypotension (ie reduced blood pressure but without the increased heart rate) which seems to affect the majority of people with ME. The draft guidelines also contain brief notes on the management of orthostatic intolerance.

Bearing in mind the remarks of Dr Speight and the other doctors quoted above, the total omission of any mention of MCAS from the proposed guidelines seems curious to say the least.        

It is worth mentioning that there is a Royal College of GPs toolkit on Ehlers-Danlos Syndrome (produced in partnership with Ehlers Danlos Support UK) which includes a section on ‘Emerging Major Associations’ where the other related conditions are mentioned. It’s interesting to speculate if there will come a time when ME/CFS will also appear on that list.

For the time being, however, says Chris, it is too early to say how these various conditions might fit together. She hears all sorts of speculations online (is ME really MCAS?; is MCAS caused by ME etc?) but it seems to her that at the present time, there is too little to go on. What is really important, vital even, is that those with a diagnosis of severe or moderate ME who feel that they may have some or all of the symptoms of MCAS are able to see a doctor who understands the condition, who is able to examine them, and if necessary give them a diagnosis and prescribe medication to help their symptoms and improve their quality of life in the same way that Chris has been helped.

As the draft guidelines say, there is no current treatment or cure (nonpharmacological or pharmacological) for ME/CFS. There are however treatments for these co-morbid conditions. So it would be unfortunate if they continued to fall beneath the radar of, we suspect, a great many patients and doctors – and if the opportunity afforded by the revision of the guidelines to bring this to their attention was overlooked.

If you would like to know more:

  1. Here’s a very concise, accessible YouTube summary of MCAS by Dr Tina Peers, an expert GP who specialises in the condition. The video is aimed at people who have long COVID but it is just as applicable to those with ME.
  2. Additionally, the PoTS UK national patient support group has very good, concise info on PoTS plus the other associated conditions. Also worth looking at Mast Cell Action on MCAS.
  3. The best way to find a doctor is through the national patient support groups: PoTS UK and Mast Cell Action
  4. You may encounter some confusion about the ways in which MCAS and PoTS are diagnosed so I’ll share what I know here, though as you’ve probably guessed, I’m not medically qualified. MCAS: Doctors sometimes think a high serum tryptase test is used to diagnose MCAS but in fact this is a test for the more widely understood – but less common – mast cell complaint, mastocytosis. MCAS will usually give a normal tryptase result but that doesn’t mean you don’t have MCAS. Apparently the best way to diagnose MCAS is by symptomatology plus a positive response to medication. PoTS: Many people are deterred from seeking a PoTS diagnosis because of concern that they may have to undergo an arduous Tilt Table Test, but this should not be necessary. Chris’ doctor was aware that this test is unsuitable for people with ME and normally uses the Active Stand Test instead. Unfortunately, even this requires the patient to stand for ten minutes, but in Chris’ case she was diagnosed without any test at all due to the severity of her condition.

Sadly, COVID-19 Could Just Be The Start Of Your Problems..

I know you have enough to worry about already with the pandemic situation the way it is, but there is something else important that you should know. The sad truth is that if you get COVID – 19 and survive, it could just be the start of your problems.

Ever since we first heard of this new virus, those of us who have experienced ongoing life-altering symptoms over many years following viral infection have feared that it would leave a great many more people in a similar condition to ourselves. It gives me no satisfaction whatsoever to report that this appears to be the way things are heading.

This thread from Reddit contains a distressing discussion between a great many previously fit and healthy young people who have all been left in a similar situation by COVID – 19, experiencing not the mild illness they were led to expect but a much more severe set of symptoms which, even after eight weeks or so, don’t seem to be going away.

As if this was not disturbing enough, they often find themselves treated with scepticism by doctors, who refuse to investigate their ongoing physical symptoms, referring them instead for talking therapies such as CBT (cognitive behavioural therapy) which are more usually associated with mental health problems. Employers, friends, and even family can often be equally disbelieving. “My mother has basically disowned me,“ reports one young man of 33.  These people are finding themselves in a living nightmare and cannot understand the lack of concern.

“Why is the media focusing on mortality figures for the old and infirm when it should be educating on the potential long-term health risks to all ages?” asks Golden_Pothos, who starts off the thread.

Well, since I started writing this post, several mainly well-informed articles about the potential long-term effects of COVID – 19 have appeared and let’s hope more will follow, but the broader answer is that the media have conspired for some time with successive governments in downplaying the potential severity of chronic illness, the existence of which appears to be regarded not so much as a human tragedy but an expensive inconvenience. The government’s official terminology is carefully chosen to reflect this perspective. So we find that people aren’t paid ‘incapacity benefit’ any more but ‘employment support allowance’. The implication of the name is that if an illness doesn’t kill you, you will make a full recovery. All you need is support until you are well enough to return to full employment. This is the climate in which it is okay for people with undeniably progressive conditions such as Motor Neurone Disease to be sent for benefit assessments in case they have got better.

Unfortunately this perspective from the politicians is supported by the decades old beliefs of the medical profession itself, which over a great many years has tended to treat any new and novel condition not with curiosity but with scepticism. Epilepsy, motor neurone disease, multiple sclerosis, Parkinsons Disease, even stomach ulcers have been dismissed as ‘somatised’ conditions invented by the mind rather than real physical dysfunctions deserving investigation. In every case, as medical knowledge has progressed, these conditions have eventually been revealed as the physical problems they always were, but this hasn’t stopped the next new illness to come along being trivialised and dismissed in exactly the same way, the doctors seemingly unable to tolerate a situation in which real physical conditions exist which they don’t understand.

In 1955, following an infectious outbreak affecting 292 members of staff at the Royal Free Hospital in London, many of those affected experienced symptoms which waxed and waned over a long period and the term myalgic encephalomyelitis (or M.E. for short) was coined to describe the condition. To start with, it was acknowledged as a neurological condition affecting multiple bodily systems but a few years later, in 1970, two psychiatrists McEvedy and Beard, took a new look at the case and, without interviewing or examining any of the patients involved, reached the new conclusion that it had all been a case of “epidemic hysteria”, one of the principal arguments for which they cited as “the high attack rate in females compared to males”. So it was that M.E. joined the long list of conditions mentioned above, dismissed as “medically unexplained” because it was yet to be fully understood by medical science.

Skip ahead to 1984 and a similar realignment in perspective was performed in the USA following an outbreak at Incline Village, where the term M.E. was discarded in favour of CFS or ‘chronic fatigue syndrome’. This was a name apparently intended to trivialise the condition, for ‘fatigue‘ in no way comes close to describing the extreme exhaustion and multifarious other symptoms which those with M.E. report. The name change certainly spread confusion, with some believing the two conditions to be one and the same and others to be two separate entities. To make matters worse, CFS is widely confused with the term “chronic fatigue”, which is actually just a symptom present in many different conditions rather than the name of any specific one. Add to this a baffling number of different diagnostic criteria, some more usually interpreted as M.E. and others as CFS, with certain researchers apparently happy to come up with more variations from time to time just for the sake of it, and you find yourself with a very confused picture. It is hard to work out exactly how all these complications have come about. It is almost as though the powers that be were trying to deliberately muddy the waters to impede progress – but surely that not could not be the case?!

In the years since CFS was ‘invented’, a small group of British psychiatrists has made it very much their own, promoting the use of GET (graded exercise therapy) and CBT to treat it. They argue that patients are kept ill not by any ongoing disease process but by ‘abnormal illness beliefs’ and deconditioning due to inactivity. All they need is a course of graded exercise, with associated CBT to encourage it, and they will be up and about again.

Patients strongly reject this theory, many having submitted in good faith to just such a programme of graded exercise only to find that it brought about a long term and sometimes even permanent deterioration in their condition. Patients were therefore astounded when a large scale trial in 2011 claimed to prove that graded exercise and CBT were effective treatments for the condition.

PACE was a £5 million government Trial (funded in part – uniquely for a clinical trial – by the Department of and Work and Pensions). It is the most expensive piece of research into CFS/ME ever conducted and was intended to provide a definitive answer to the question of how the condition should be managed. At first, it seemed to have done exactly that but when first patients and then other scientists and health professionals looked more closely, the trial was found to have a great many flaws.

Just to state a few of them briefly:

  • The researchers made changes to their assessment criteria such that patients could be sick enough to enter the trial and then get worse yet still be classed as ‘recovered’ at the end of it.
  • The unblinded trial relied on subjective assessments of success, with objective assessments included in the original protocol (such as returning to work) being dismissed by the researchers as irrelevant or unreliable.
  • During the trial, participants received a newsletter extolling the virtues and success of the very therapies they were supposed to be assessing.
  • The researchers’ conflicts of interest were not divulged to participants when they entered the trial.
  • One of the criteria used for patient inclusion in the study was the Oxford definition, since dismissed in the US National Institutes of Health report into M.E. as harmful and in need of retirement.

This is by no means an exhaustive list of flaws but it gives you a flavour of the quality of the trial, which is now being taught in some US colleges as a text book example of how not to do science. Following the disclosure of these various issues, a number of letters have been sent to the editor of The Lancet (where the trial’s first paper was published), asking for an independent reanalysis of the study. The most recent of these was signed by over 150 health professionals, scientists, members of parliament, and patient organisations worldwide. In spite of the great weight of evidence in support of such reanalysis, no direct response to these letters has been received.

It seems astonishing that the PACE study is so flawed and has clearly been shown to be flawed but the editor of the supposedly distinguished journal which published it seems to feel no need to respond its critics. Similarly the PACE researchers themselves continue to act as though nothing has changed, still insisting that the PACE study is fine and they have done nothing wrong. How can this be explained?

It seems to be partly due to the power of the establishment here in the UK. The PACE researchers and their colleagues are highly regarded individuals. They are believed to be right by those in authority simply because of who they are. That they should finesse the figures the way they appear to have done is considered unthinkable, so their friends in power refuse to believe it is true. They certainly wouldn’t stoop so low as to look at the facts involved. We may think we have evidence-based medicine in this country but what we really have is eminence-based medicine, the fundamental principle of which is that eminent doctors cannot be wrong.  It will take rather more than the truth to bring them down.

And then there is the all-important matter of economics. It is much cheaper to send patients for six week courses of CBT than it is to accept that we have on our hands a poorly understood organic illness requiring proper investigation, research and ultimately treatment. From the perspective of those in power, the country could not afford for PACE to be wrong, any more than we could afford for COVID – 19 to be a genuine threat, which is why our government pretended it wasn’t until the sheer weight of deaths forced them to change their minds. Deaths cannot be ignored but sadly chronic illness can, and it all too often is .

In recent years however, at least outside Britain, some advances have finally been made in the battle to address the true nature of M.E. The US Pathways to Prevention and Institute of Medicine  reports, while not helpful in every respect, have recognised both the potential severity of the condition and the fact that it is not psychiatric – or psychological – in origin. The funds for research that were promised have been slow to follow but perhaps they will come in time.

Even in Britain, the NICE guidelines for the treatment of M.E. are being reassessed and there is a chance, albeit a slender one, that the recommendation of graded exercise will be withdrawn, just as it has in the US. If this happens, however, its proponents will not be in too much despair. They have long since had other plans in mind.

As long ago as 1997, they were were writing: “we regard chronic fatigue syndrome as important… because it provides an example for the positive management of medically unexplained illness in general.”

You can understand the appeal for them of unleashing their ‘expertise’ on this broader pool of patients. While only a relatively small proportion of people in the country have ME/CFS, a much larger number purportedly suffer with MUS.  A key 2001 study by Nimnuan, Wessely, and Hotopf concluded that no less than 52% of patients who were newly referred to secondary care outpatient clinics had medically unexplained symptoms. Moreover, it has been quoted that people of working age with medically unexplained symptoms consume 10% of all NHS expenditure. Clearly if these figures are correct (which they almost certainly aren’t,  but more about that later) the scope of MUS greatly exceeds that of the mere 0.25 million people in the country who are thought to suffer with M.E.

It will not be surprising then that new services for MUS are being rolled out to address this supposed need. The Guidelines for Commissioners of Services for Patients with MUS (2017) propose the instigation of MUS services in both hospitals and the community to manage patients with MUS, directing them away from costly referrals, medical investigations and interventions with long hospital stays, and instead giving them lower cost mental health treatments like CBT.

It might be argued that this will cause genuine physical illnesses to be overlooked by doctors, many of whom have already been persuaded that 50% of their patients aren’t really ill and are therefore preoccupied in trying to identify which ones they are, and it might be reasonably supposed that some patients will die as a result, but never mind: the end result will undoubtedly be less expensive.

Neurology attracts special attention in the new crusade against MUS, having been identified as having one of the highest proportions (at 62%) of patients with MUS in the study by Nimnuan, Wessely, and Hotopf. Patients attending with neurological symptoms which do not accord with any recognised pathology are therefore extremely likely to be diagnosed with FND, short for ’functional neurological disorder’ and very much the diagnosis du jour. They will then be referred to one of the new FND clinics that have opened across the country, where they will undergo CBT and also most likely be investigated for deep-seated underlying trauma, a therapy which patients with M.E. have mainly been spared but which is currently gaining in popularity. These patients, who like those with M.E., may well have been waiting some years for a diagnosis, will be reassured that their illness is being taken seriously at last – after all, the word ‘functional’ makes it sound like it is real, does it not? But in fact, the opposite is the case. The corridors of social media currently ring with frantic arguments between patients who believe that FND is a ‘proper diagnosis’ and those who know that it isn’t.

Divide and rule.

The MUS offensive is being pursued on many different fronts, including that of IAPT (Improving Access to Psychological Therapies), the programme originally intended to ensure that patients received therapies for mental health problems such as anxiety and depression which all too often had gone untreated. Its extension to cover long-term conditions and MUS has raised concerns, however,  and an audit by Michael J Scott has suggested that the therapies used (principally CBT) come nowhere near achieving the 50% curative rate which has been claimed for them.

As essentially the same group of researchers is involved, it is perhaps not surprising that the work on MUS appears to be full of similar flaws to those which beset the PACE Trial. Take the Nimnuan, Wessely, and Hotopf study mentioned earlier. In a previous article on this blog, I made some suggestions about why the numbers of patients with MUS might well have been over-estimated (please scroll down to the paragraph beginning “Is all this really true?” ) and a recent article by a patient argues that account has not been taken of the substantial amounts of misdiagnosis which were involved.

Meanwhile, David Tuller, the US public health lecturer who has done so much to publicise the shortcomings of the PACE Trial, has been looking at a study of CBT for IBS (irritable bowel syndrome) this having been identified as a form of MUS. Tuller points out that the IBS Symptom Severity Scale used to assess the effects of CBT compared to ‘treatment as usual’ in the study required a difference of 50 points or more to be considered clinically significant. In fact, only one of the two types of CBT which were tested in the study achieved symptom improvement in excess of 50 in the 12 months follow up, and neither exceeded 50 in the long term assessment after 24 months. In spite of these results, the use of CBT for IBS has been heralded as a great success.

Tuller has also highlighted a gross and continually perpetuated error concerning the overall impact of MUS. A 2010 study by Bermingham et al concluded that MUS accounted for around 10% of NHS expenditure on people of working age. However, Professor Chew- Graham, one of the leading proponents of psychological therapies for MUS, quoted this a little differently, stating that people of working age with MUS accounted for 10% of total NHS expenditure. Unfortunately, this misreading has since been repeated many times over by Professor Chew-Graham and others such that the impact of MUS on the NHS budget has been grossly exaggerated in influential places over a long period of time.

In a recent Skype talk to the Sheffield ME Group, Tuller recounted his attempts to get some of these mistakes corrected and the editors’ lack of urgency or concern to get them changed. It is as if the facts don’t matter to them, as if they are only going through the motions of proving their case. You can understand how they might start to develop that mindset. It does indeed seem that those in power are so desperate for easy, cheap answers to difficult questions that they will soak up any old nonsense as long as the price tag is right.

It is too early to say how many of those with post-viral symptoms from COVID-19 will go on to develop M.E, but in a climate like this, is there any hope that they will be taken seriously if they do? Is it not much more likely that they too will be trivialised and fobbed off with CBT, that they too will be pushed into graded exercise, only to find that it makes their condition worse? In the aftermath of the pandemic, there will be too many other concerns to address, and less money to spare than ever. It seems too much to hope that those in power will come to their senses and take a proper, responsible look at the claims of the snake oil salesmen who are taking them for a ride, meanwhile condemning so many people with overlooked physical illness to lives of relentless ill health.

Notes:

1)        It is frequently claimed that people with M.E. do not want to be given a mental health diagnosis because of the stigma involved. In actual fact, they simply do not want to be given an inappropriate diagnosis. There is widespread evidence of ongoing organic pathology in M.E. but none to support the deconditioning theory of the graded exercise proponents.

2)        In particular, research has shown that people with M.E. have an abnormal response to exercise, producing excess lactic acid and, in a cardiopulmonary exercise test, uniquely performing less well on the second day of exercise.

3)        You can find a summary of what biomedical research tells us about M.E. here.

4)        ‘Medically Unexplained Symptoms’ are not necessarily unexplainable. They simply have not been explained by our current state of medical knowledge and testing ability. To assume they are therefore a mental health issue is simply that, an assumption. There is no evidence to support it.

5)        I do not mean to imply that there is anything wrong with CBT therapy per se. I am sure it can be an effective treatment for mental health problems. There is no evidence, however, that it is a universal panacea, which is how it is currently being touted.

 

 

Coming down the Line

Update 22 Jan: Since posting this article yesterday, I have received some very persuasive comments echoing and expanding on my concerns. Please make sure you read the comments.

So, a few weeks into 2019, where do we think we are with M.E.? Are we making progress at last? Or are things very different from how they seem?

As far as I can tell, there has certainly been a positive feeling in the air ever since the helpful American IOM and P2P reports back in 2015 – and research in the U.S. does seem to be making progress these days, albeit with only a fraction of the funds which the NIH teasingly suggests should be coming our way.

Yet there is still a big question mark over things. Are we – and our wonderful biomedical researchers in the US – being hoodwinked? Are we being strung along and fooled into expecting funding that will never come? I don’t have the expertise to know for sure – but fortunately there are experienced bloggers such as Erica Verrillo and Jennie Spotila over there who can hold the authorities to account over this.

The modest grounds for optimism across the pond and in particular the NIH’s withdrawal of GET (graded exercise therapy) and CBT (cognitive behavioural therapy) as recommended therapies for our condition, coupled (possibly) with good old wishful thinking, have encouraged expectations in turn to be raised over here in the UK. The unexpected decision to review the NICE Guidelines for M.E. in spite of an earlier decision to leave them alone, coupled with reassuring noises about tearing them up and starting all over again, have been taken as further grounds for encouragement.

For many of us, however, all that hope dwindled away to nothing when the names were released of those who would sit on the NICE Guideline Review Committee, more than 50% of them transpiring to be adherents to the biopsychosocial theory of M.E. which has GET and CBT at its core. The possibility that GET and CBT would be withdrawn from the guidelines now seemed to many of us to be exceedingly unlikely.

Those in authority continue to say “trust us,” that all will come right in the end, and there are plenty who seem inclined to believe them. Yet it seems to me, even with only one eye on the Twitter feed – and sometimes not even as much as that – that in the UK at least, this time of waiting, poised on the edge of a better time which never quite seems to arrive, is going to come to an end. And not in a good way.

A lot of what is happening to make me reach this conclusion is going on ‘under the radar’. It is being talked about but only as ‘anecdotal evidence’, most commonly in the private corridors of Facebook groups, stories of those with various long term conditions, not just those like M.E. which the medics treat with suspicion, but all manner of highly respectable, fully accepted aches, pains and other unpleasant symptoms, controlled for years by repeat medications which are now slowly – and sometimes not so slowly – being withdrawn.

The excuse most often used for this is ‘patient welfare’. “The thing is,” the doctor explains to the patient who is sitting there shocked yet eager to please, though faced with the prospect of a lifetime of increased levels of pain or some other form of suffering , “patients are taking medication for one symptom which is then provoking a second symptom, which is then requiring a third medication to relieve it, and so it goes on. Through the side-effects, we are causing as many symptoms as we are treating.”

There is of course a great deal of truth in this, and doctors – and indeed patients – have known about it for years, yet the NHS has shown little intention to do anything about it, not until now. Now that the money is running out.

Occasionally, a little of what is happening makes the press. There has been widespread coverage, for instance, of the ban on prescribing numerous common drugs which are also available ‘over the counter’, sometimes at a lower cost than that of the prescription itself. This is arguably a sensible strategy for a cash-strapped NHS, though it is no laughing matter for those who until now have been entitled to free prescriptions but will now have to pay for these often essential drugs out of their own funds.

Less well publicised – and many would have thought more sinister – was a scheme in Oxfordshire reported by the Daily Telegraph to have been offering GP practices “cashback” for money they saved in cutting their expenditure on drugs prescribed to elderly patients in care homes. Practices were apparently told to ‘cut spending on medication by least £2 per care home resident”, then told they could ‘keep £1 per patient plus half of any more savings made’.

I’m pleased to say that local GPs were reported to have ‘lambasted the move’ but health officials apparently claimed that the incentives were to encourage doctors to ‘review the quality, safety and cost effectiveness of their prescribing’. So once again, the cost saving was being excused on the grounds of patient welfare. That report appeared in May 2017 and a Google search has revealed no further reference to such a scheme. Perhaps it has – quite rightly – been abandoned, but I can’t avoid the suspicion that it could equally well simply have been hushed up.

Reported more recently and more widely (in Feb 2018) were the ‘referral incentive schemes‘ run by CCGs across England, ‘offering GPs as much as 50% of any savings they can make’ by referring fewer patients to hospital. It would be interesting to take a look at some of the small print of that scheme. For instance, if a patient dies as a result of the decision not to refer, does the GP practice still get to keep the money? All CCGs were asked if they had such a scheme in place. Of the 180 that responded, 24% reported that they did.

Coming right up-to-date, there were widespread news reports just a few months ago of a new scheme in which rather than seeing the GP one to one, patients with long term health conditions would meet in groups of up to 15 at a time, spending much of this period ‘with a “facilitator” – a receptionist, clerk or healthcare assistant with a day’s training‘ (my underlining) – who can point them to advice on their health condition.

Hmm. This idea is also said to appear in the much vaunted Soviet-sounding NHS Ten Year Plan, which was in the news just the other day as I write, so they clearly still think it’s a great idea.

I suppose I admire the fact that for once they’re not actually claiming that seeing ‘a receptionist, clerk, or healthcare assistant with a day’s training’ is somehow safer than seeing a qualified doctor. I suppose we should be grateful they’re at last being honest about what they’re doing. The Daily Mail report states blatantly ‘the scheme is aimed at saving cash and doctors’ time’. At least we’re getting real here. Mind you, I doubt they’d dare to do that if these were ‘real’ i.e. life-threatening illnesses they were talking about. They are taking this step in the knowledge that they, the medical profession, and successive governments have spent a great deal of time and effort in convincing the population at large that long-term health conditions aren’t really diseases at all. They’re lifestyle choices selected by lazy people who just need someone with a day’s training to point out the bit of the screen they need to read and they’ll be right as rain again. And by ‘the population at large’, of course, we mean all the people who don’t have a long term condition. (Yet.)

Doctors will be on hand some of the time ‘to discuss tests and treatments’ with these fifteen people and you can see that this might free up some of their time by preventing unnecessary repetition. Even so, diseases vary from one to the other and from one patient to the next, and it seems to me that this idea might work better on paper than in practice.

Apparently ‘health chiefs say they want this approach to become the default care option for those with long-term conditions’, but they admit ‘the plans require ‘a leap of faith’. I can’t help but feel it is really the patients who are being expected to leap into the dark.

One potential benefit of this scheme that doesn’t get a great deal of attention in the coverage is the chance to discuss one’s condition with other patients. Whereas the group facilitator may have a single day’s training, some patients may have many years of experience twenty-four hours a day, at a level of understanding which only patients can share. Even if illnesses differ, patients may still have a lot to learn from each other. It seems to me that groups which understand and unlock this potential are likely to be the most effective, as opposed to those which focus on the day-long trained facilitator finding the right page to read out from her instruction leaflet.

The use of these crash-course trained facilitators ‘teaching’ a room full of patients in the internet age seems rather bizarre, and not surprisingly it reminds me of experienced patients at our local M.E./CFS clinic being taught – purportedly – how to manage their illness by someone who seemed to have just read the clinic leaflet for the first time the previous afternoon.

I doubt if this will be the only similarity between these new group sessions and CFS clinics. The publicity so far does not mention CBT, but this universal panacea is – according to the official figures – so cheap and so reliably effective, that it is difficult to imagine it not being added into the mix. In the new NHS, in which doctors are glimpsed across crowded rooms and drugs are withdrawn for health reasons, the all-effective CBT will surely be the saviour of the day.

I’ve written a lot here in recent times about ‘medically unexplained symptoms’ (MUS) and we’ve discussed the numerous other terms that are used with the same sort of meaning: psychosomatic symptoms, somatoform disorders, conversion disorders, idiopathic disorder, hypochondriasis etc etc… One word that is frequently used as part of these terms is ‘functional’, and I find it a particularly objectionable ingredient because it gives the impression of being the opposite of what it is. A ‘functional’ disorder gives the impression of being a systemic or mechanistic problem, something that clutters up the works and prevents the wheels going round properly. After months or perhaps even years of searching for what is wrong with them, patients often feel they’re finally making some progress when they’re told they have a functional disorder. They have no idea they’ve actually been told the opposite of what they think. They’ve been told that the doctor believes it’s all in the mind” after all.

Actually, if I’m going to be fair, most of the information online doesn’t actually say that any more. They’ve tightened it up in recent years, so it’s more likely to say something like “doesn’t appear to have a physical cause”. This may be a step in the right direction, but I’m not all that impressed. If they said something like “doesn’t have a physical cause which is currently understood but doctors will almost certainly find one in a few years time as medical science develops,” then I think that would be closer to the truth. Certainly, to judge by the attitude of most doctors to MUS/functional patients, “doesn’t appear to have” gets edited down to “doesn’t have” in their minds.

Anyway, the reason I have singled out “functional” from the morass of MUS terminology, is that the clinics for “functional neurological disorder (FND)” appear to be in the forefront of the MUS facilities we have been ‘promised’. The FND network is being expanded across the country.

These excerpts from the NHS A-Z website explain how the various acronyms (MUS, FND, and – perhaps not surprisingly – ME/CFS and CBT) fit together:

ss fnd mus cfs 1

ss fnd mus cfs 2

ss fnd mus cfs 3

It’s strange how persistent misconceptions about M.E. can be, isn’t it? Unfortunately the majority of people with the condition do not necessarily get better over time though I have heard the theory time and again over many years. I was once given a massage by a lady who insisted that people usually recovered in six months and she couldn’t understand why I hadn’t. I expect she is still telling people the same thing all these years later. And of course CBT and GET are both recommended by this (presumably) authoritative NHS website, without any mention of the NICE guidelines being reconsidered. But what I am particularly wanting to highlight here is the purported link between CFS/ME and MUS. I suspect a similar link will be suggested between CFS/ME and FND.

According to the information on the net about the FND clinics, they seem to have some similarity with the ME/CFS clinics. A multi-disciplinary team typically provides CBT and GET or similar, for instance, but there is also often an emphasis on the presence of deep-seated trauma from past events, which is said to stem from an inability to express emotion. Most people with ME have been spared this far-fetched explanation for their symptoms but if they’ve been under the ‘care’ of, for instance, the Leeds inpatient clinic (aka The Yorkshire Centre for Psychological Medicine) they are unlikely to have escaped a weeks-long search for such a trauma.

I concluded an earlier post A Morass of MUS by suggesting that if in the future the NICE guidelines are indeed amended and the use of CBT and GET for ME is made more difficult by the growing weight of evidence against them, the diagnoses ME and CFS might be quietly dropped and new patients designated MUS instead, so that CBT, GET, and other psychological therapies could be used with freedom.

Could something similar happen with FND, I wonder? Having taken a brief look at the constituent parts of an FND clinic, all fitted out for CBT and GET – and now with the exciting added extra of treatment for deep-seated trauma – it seems likely that the authorities will consider these new facilities to be ideally suited for the treatment of what used to be ME/CFS. Why keep those ‘old’ unhelpful diagnoses if NICE makes them problematic? Why not say we have FND instead? We’ve long since asked to be treated as a neurological condition. Now it will suit them to give us what we want.

If you are not convinced that this is likely, look at this symptom picture:

People with FND often find they experience ‘sensory overload’ – lights feel too bright, noises too intrusive, heat and cold very uncomfortable, uncomfortable skin sensations (tingling, crawling, prickling, tenderness or pain). The difficulty with ‘gating’ may also cause problems with concentration.

A common FND sensory symptom is pain. The pain is often but not always difficult to locate and seems to come from muscles, skin or joints at various times. It gets better and worse, and is usually combined with a feeling of intense tiredness or fatigue, and difficulty concentrating…

When someone is struggling to concentrate, they are not able to filter out unimportant sensory information to focus on what is important. People who are trying hard to overcome their difficulty concentrating or problems filtering sensory information often feel exhausted or fatigued a lot of the time. These symptoms are very common with FND.

A person with FND may often complain of memory problems. This is often a result of finding it difficult to concentrate. As a result you might lose things, such as keys, or find you have put the kettle in the ‘fridge’ instead of back on the worktop. You may forget appointments or things that you have done recently, and often feel that your brain is in a ‘fog’. You might also feel extremely fatigued.

The fatigue usually varies day to day, but characteristically if you overdo it one day you pay for it the next and have to take more rest to compensate. Some people complain that the fatigue is so intense, for example, that they have to spend a day in bed after they have been shopping, yet on other days they feel very bright.

The above is an extract from a description of FND symptoms taken from the Sheffield FND clinic website. ‘Gating’ is a term which relates to difficulty in filtering sensory information and is used as the explanation for many FND symptoms including heightened sensitivity to light, noise, temperature etc which we know in the case of M.E. to be caused by hypothalamic dysfunction. Setting this difference to one side, however, the above could be a description of a great many symptoms of M.E. Bearing this in mind, I don’t find it too hard to imagine people with M.E. in the future – newcomers perhaps not even aware of ME/CFS – being treated in a clinic for FND, deep-seated traumas and all. As ME/CFS would no longer be the diagnosis, the ME/CFS Guidelines could be ignored.

So how does this affect our present concern with NICE?

I am starting to wonder if the late decision to revise the guidelines was really a strategic ploy in a much larger game: a ploy to keep us all focused on a detail which would soon become irrelevant. A ploy to keep us looking out of the train window, squinting at the appointments to the Guideline Development Group, trying to guess if there’s still a chance that CBT and GET will be removed in a couple of years, all the time unaware of what is heading towards us down the line ahead, a monstrous train which is bent on headlong collision.

And what exactly is this nightmare train?

The future of British medicine, the future of the NHS, a future which no longer has the funds to deal with chronic illness and so prefers to pretend it doesn’t exist. A future in which ‘unhelpful’ medicines used for years are taken away, patients meet with each other instead of with doctors, and people with symptoms that are not understood are – more than ever before – assumed to be mentally ill.

A future in which a large proportion of what we used to know as medicine has been subsumed by psychiatry.

Meanwhile those with genuine mental health problems can’t get the treatment they need because those who should be helping them are treating the physically ill. I must admit that I can’t work that one out. Why are the psychs so keen on treating the physically ill when they can’t provide enough care for those with real mental health issues? Could it be that they simply find those who are genuinely mentally ill too demanding and prefer to treat us instead?

And what about the once mighty drug companies? How do they feel about all those drugs being taken away? I can’t work that one out either. I assume they must have a plan but I doubt that it helps the rest of us.

But these details aside, I’m afraid the rest of the picture seems to make perfect sense. It’s all about saving money, and we will all suffer because of it.

It’s ironic. All this time, we patients with M.E. and other ‘misunderstood’ conditions have wanted to be treated the same as other people with chronic illness. Now it’s going to happen, but not in the way we had hoped.

Things aren’t going to get any better for us. They’re going to get worse for us all.

*************************************************************************************

After all the above, it’s rather ironic that – as I mentioned last time – I have recently published a creepy (and funny) children’s fantasy story. This explains the incongruous ad you may have glimpsed in the sidebar. Please be kind to me and take a look at all the excellent reasons why you should get yourself a copy. And no, Grimly Darkwood isn’t my real name any more than Spoonseeker is.

Anyway, let’s hope the post you’ve just read turns out to be a fantasy story too. I really hope it does. With all the posts I’ve done on MUS, I’ve been scared of unnecessary scare-mongering and I’ve thought long and hard before publishing, but I think it’s important that we all express our concerns. These are strange times we live in and it’s not always easy to know what will happen next.

The Vale of Strange

The Shop on Peculiar Hill Cover

You may wonder what that picture’s doing here and what that title ‘The Vale of Strange’ is about. It should all become clear as this post progresses. But I think you will agree that ‘The Vale of Strange’ sounds like a fair description of where we find ourselves when we’re trying to argue the case for a better deal for people with M.E. When we’re trying our best to set out the facts as clearly and concisely as possible, yet finding that many of those in positions of power seem to have little regard for the truth, preferring to stick with what their colleagues in command tell them they must believe, rather than study the evidence for themselves.

Writing here back in June about the review of the NICE Guidelines for ME/CFS, I said “it’s anyone’s guess what will happen when the interminable review is finally completed in 2020 – though the smart punters would probably put their money on CBT and GET remaining in favour”.

Unfortunately subsequent events have suggested that those ‘smart punters’ would be right. The choice of personnel for the committee which will review the guidelines, including as it does many who appear to be wedded to the use of CBT and GET, while omitting many of those who hold the opposite view, suggests that I was being unduly optimistic when I spoke of it being ‘anyone’s guess what will happen’. When you see an old, dilapidated truck heading for the edge of a cliff, controlled by a committee of drivers, about half of whom want the vehicle to maintain its present course, you don’t have to think too carefully to predict what happens next.

Of course, there are some excellent people on the committee; there are just not enough of them. There are, as I say, far too many who have supported GET and CBT over the years, who have bought into the unproven, ill-founded biopsychosocial theory of ME. Some people, including at least one voice I usually respect, have tried to excuse the inclusion of these GET apologists on the grounds of the need for ‘balance’. But what kind of balance would this be?

Just to recap what most of you reading this will already be well aware of: CBT and GET, as referred to in PACE, are potentially harmful therapies which emerge from the unproven biopsychosocial theory of M.E., while PACE, the largest trial purporting to support this approach, has been widely debunked and discredited. A series of letters have been sent to The Lancet, the Journal which published the Trial, the latest signed by almost two hundred scientific and medical organisations and prominent individuals, all calling for an independent reanalysis of the trial. It is perhaps an example of the arrogance of those who consider themselves to be part of a clique whose pedigree places it above such matters as truth and falsehood, right and wrong, that they have not felt obliged to respond.

And given our current state of knowledge about M.E., the only reason that a NICE Guideline committee split between those for and against GET can be said to represent ‘balance’ is because those who have lost the argument refuse to accept defeat.

Deep down somewhere, even the PACE team know that the data has been reassessed, the argument is over and they have lost. They know that an independent reassessment will come out against them, which is why they are making sure their friends will not allow it. Not only have they lost the argument, they have – in a metaphorical sense – thrown their toys out of the buggy and are sitting there sulking. But in such a way that isn’t obvious to those in the ruling clique who have never taken the time and trouble to understand about PACE.

The PACE apologists don’t engage with the facts any more. They make statements which appear to do so, yet they are simply repeating the same old tired phrases which lost the argument last time around. Michael Sharpe’s performances on Twitter have been a perfect example of this: making a statement here and there, cherry picking which tweets to engage with and which to ignore; not submitting any kind of joined up, reasoned argument, just giving a studied impression of what he hopes will seem like a reasonable man.

To talk about ‘balance’ in the NICE committee is going along with this charade of pretending the argument isn’t over. It gives the impression of representing both sides of a finely balanced discussion. But this isn’t how things are. To the extent that it is a balance, it is only between right and wrong, between truth and lies, between the proven and the groundless. That, surely, is no kind of balance at all.

   *     *     *

The patient community have made impressive efforts to make known their dissatisfaction with the proposed personnel for the guidelines committee. Among all the other many patient advocates, I was invited to take part and I can only apologise for my total lack of response. The reason for that will become clear very shortly. Obviously, I am coming late to the party on this and a lot of representations have already been made, but it is worth my mentioning a new initiative by M.E. Action, encouraging patients to send a Christmas card to NICE staff telling them why those who have championed the ideas and treatments that have harmed the community should not be writing the guideline that will influence treatment for decades to come. I shall certainly be participating in this and I encourage you to do the same.

So what have I been doing the last few months? I think the best way to answer that is to say ‘something else’.

One of the most wearing things about being an M.E, patient advocate (for want of a better word) is the need for constant repetition, of having to make the same valid points over and over again in the hope that someone will listen. This can get to you after a while, and in recent times I have tried to balance writing this blog with writing other things, just for the sake of my sanity,  which is why there have been fewer posts this year than previously.

One of the things I did was to go back to writing some children’s fantasy stories which I had previously put to one side due to the disinclination of British literary agents to have anything to do with them. Now I decided I would try self-publishing them, and so was happily surprised when a few months ago, by a serendipitous turn of events which I won’t go into right now, a small American publisher, Journey Fiction, offered me a contract for the books…

The title of the series, you may now have guessed, is The Vale of Strange and the first volume, The Shop on Peculiar Hill, was published on 1 December. Should you be interested, you can find out more about the books on Amazon or at www.grimlydarkwood.com  They’re best described as humorous adventure stories and are aimed at the age range 8 to 12 but I’m doing my best to convince adults that they will like them too. Indeed, I’m happy to say that most of the adults who’ve tried the first book  do seem to like it. The Shop on Peculiar Hill is available in both paperback and electronic form at Amazon and other online retailers. Just search for my pseudonym ‘Grimly Darkwood’ or follow these links: Amazon UK    Amazon.com US

So that’s why this post is entitled The Vale of Strange and why there’s a rather strange picture up at the head of it. I hope you will forgive me for writing about these books on this occasion – I won’t make a habit of hijacking the blog in this way. In any case, most of my writing and campaigning about M.E., the blog included, is going to have to be put on hold – or at least on go-slow – for the time being. There’s no way I can both do that and write and publish fiction, not and maintain the level of health – or more accurately, ill health – that I have at the moment. Yet fiction is something I’ve wanted to do all my life, so I don’t want to pass up on this new and unexpected opportunity l’ve been given.

I would like to be able to tell you that the book is about M.E., perhaps a metaphorical quest to slay an insidious dragon, but I’m afraid it isn’t, not ostensibly. Nevertheless, it’s a children’s fantasy story so it will never be a million miles away from the antics of those who believe that patients shown to be made demonstrably worse by exercise can exercise their way back to health. The story also involves a population being very misled by the authorities about a matter which could have a serious impact on their health and well being, so some people might reach the conclusion that it *is*  about ME  after all.

If you would like to take a look at the book to see if you agree, or indeed for any other reason, then of course I shall be be delighted. You can buy the book and read the reviews at the links I gave above. Or if you prefer to ‘try before you buy’, there are free sample chapters here. Do write and tell me what you think, and if you are able to leave a review on Amazon, then so much the better.

As for this blog, I’m hoping to do one final post here to round up my series on ‘medically unexplained symptoms’, one which makes an important connection I feel needs attention. After that, perhaps occasional posts will be possible. We shall see…

I’m pleased to observe that the ME community is more active and organised than ever before so I don’t feel that one more blogger will be missed all that much. Even so, I do feel guilty to leave others to shoulder the yoke of repetition that has started to drive me so crazy. I’m just glad there are those of you who are willing to take it on, including those who were doing it long before I arrived and will be doing it after I ‘m gone. Tom Kindlon is a name which springs to mind but there are many others, typing away day after day, week after week, matching the intransigent determination of those who have lied – and continue to lie – about M.E. with their own intransigent repetition of the truth.

It’s a hard slog, but I’m sure that truth will triumph in the end.

 

A Morass of MUS

As you are probably aware, here in the UK, NICE are currently engaged in the lengthy process of revising their guidelines for ME/CFS. The current guidelines recommend the use of GET (graded exercise therapy) and associated CBT (cognitive behavioural therapy), the latter being used in this case to persuade patients that GET is a good idea.

Patients have every right to be sceptical. Numerous patient surveys have shown that many report being made worse by GET. Many patients end up housebound or even bedbound as a result, sometimes permanently so. Research such as that by VanNess et al has provided evidence of why such exercise is harmful, while PACE, the most influential study purporting to support the use of GET, has been thoroughly debunked and discredited – most comprehensively by Wilshire et al. In the US, the recommendations for GET and CBT have been withdrawn in view of the latest information.

In view of all this, a disinterested bystander might be forgiven for assuming that withdrawal of support for CBT and GET will be close to a foregone conclusion when NICE eventually complete their review. Indeed, they might well agree with those patient groups who have asked NICE to remove the recommendation for these therapies from their guidelines at once before anyone else gets harmed.

As it happens, however, the latter request has not been successful and it’s anyone’s guess what will happen when the interminable review is finally completed in 2020 – though the smart punters would probably put their money on CBT and GET remaining in favour.

There’s a number of reasons for this.

  1. Though anyone who takes the trouble to look at the evidence will see that PACE has indeed been thoroughly debunked, the Trial’s authors have adopted the policy of pretending that no significant flaws have been uncovered and that everything will be fine if they keep on insisting they’ve done nothing wrong. Close to the heart of the British establishment as they are, this policy has served them pretty well so far and we can’t assume that NICE won’t be taken in too.
  2. If NICE withdraw their recommendation for CBT and GET, what therapies can they offer instead? There has been so little biomedical research in recent times – due in large part to the unhelpful influence of PACE itself – that no substantial advances in treatment seem likely to arrive in time for the completion of the review. So if NICE withdraw CBT and GET, they might leave doctors with nothing at all to offer – and doctors won’t like that.
  3. If CBT and GET are withdrawn, what will the poor old NHS CFS Clinics do? CBT and GET are their stock in trade. Without them, how could they survive? Will NICE want to trigger wholesale redundancies in the CFS industry? Probably not.

So the only sensible course of action from the point of view of patients is for NICE to withdraw their support for CBT and GET (preferably right away) but when you look at the self-interest of so many of the professionals involved, it’s a very different story.

On the other hand…

Taking a broader perspective, perhaps the closure of the CFS clinics wouldn’t be such a terrible blow for the pro-GET lobby after all. It may well be that they have Plan B in place already….

…Because whether by accident or design, the new MUS (medically unexplained symptoms) clinics which are being rolled out across the country in a major new initiative couldn’t have come at a better time for them. If NICE comes out against CBT and GET and the CFS clinics fail, then the MUS clinics will provide a natural place for their staff to go. It’ll be the same sort of work but with a much larger clientele. Up until now, they‘ve only had people with CFS to work on. Now the sky will be the limit.

MUS is a far more powerful dustbin diagnosis than CFS ever was. Even Esther Crawley couldn’t come up with figures to claim that people with CFS represent more than 2% of the population. With MUS, on the other hand, you are talking about a substantial proportion of the people who come through a doctor’s door.

According to the figures in ‘The Guidelines for Commissioners of Services for Patients with MUS (Feb 2017)’, up to 20% of people who go to see their GP really have MUS, while for secondary care, the proportion ranges from 39% for dentistry up to a staggering 66% for top-scoring gynaecology. Two things are especially worthy of notice here:

  1. Should it surprise us that gynaecology produced the highest proportion of patients believed to have MUS? (Not really. Women have suffered such prejudice for centuries of course. The ‘high attack rate in females compared with males’ among patients in the Royal Free outbreak was cited by Beard and McEvedy as part of their argument for labelling ME as ‘mass hysteria’ back in 1970 for instance ) and
  2. Those extraordinary figures for secondary care come from a 2001 study by – who would have guessed it? – S Wessely et al.

Before I go on, I should explain what MUS is in case you don’t know. The acronym stands for ‘medically unexplained symptoms’ which according to ‘The Guidelines for Commissioners of Services for Patients with MUS’ can be described as ‘bodily complaints for which adequate examination does not reveal sufficient explanatory structural or other specified pathology’. Or to put it another way, they are symptoms which don’t have an obvious physical explanation. Doctors don’t understand them and they don’t show up in tests. For people with ME, this will already sound eerily familiar.

The Royal College of Psychiatrists’ leaflet on MUS explains as follows:

‘When something in our body doesn’t feel right, there usually is a bodily or ‘physical’ cause –  stomach problems may be due to an infection, or palpitations may be due to a heart problem.

 ‘What if there is no physical explanation for your physical symptoms?  We can often understand and explain such symptoms when we look at how our thoughts, feelings and stresses can affect our bodies.

 ‘But – to say that a bodily symptom is not just physical is not the same as saying they are all in the mind. Medically unexplained symptoms aren’t “all in the mind”, but neither are they all in the body.  To understand them we have to think about how the mind and the body work together.’

But in spite of this ‘a bit in the mind and a bit in the body’ description, the suggested therapies turn out to be all psychological in nature: talking therapies and anti-depressants. Oh yes, and graded exercise. You may not find this surprising.

I first looked at MUS in my post ‘Medically Unexplained Assumptions’ a couple of years ago. You may find that post of interest. Back then, I was interested in delving into the origins of the medical profession’s attitude to ME. Little did I realise that MUS was about to come back into fashion on such an extraordinary scale.

Looking at the various documents about MUS that I have been collecting over recent months, I am struck by what a massive thing it appears to be. I have already written this post then scrapped it and started again several times over. I am anxious not to exaggerate or be alarmist yet it seems to me that unless I appear to do so, I am understating the challenge which MUS presents.

Those figures I quoted above from Wessely’s study give an idea of the extraordinary number of patients which the medical authorities seem to believe are affected by this mysterious entity MUS, yet when I turn to the NHS Choices website, I see they’re going even higher. They’re attributing ‘up to 45% of GP appointments and half of all new hospital visits’ to MUS. If the trend goes on, there will soon be more people with MUS than with what I shall call (for the want of anything better) ‘accredited illnesses’.

How do the authorities intend to deal with this burgeoning problem?

The ‘Guidelines for Commissioners’ booklet proposes a hospital MUS service as part of the solution. Apparently this will:

 ‘redirect patients from the emergency department, expedite discharges from medical and surgical wards, and offer effective interventions. These activities should help avoid unnecessary medical investigations and interventions, reduce length of hospital stays, and prevent frequent referrals and readmissions. Services must include psychological therapists who would provide evidence-based MUS interventions in a timely manner. The therapists would be sufficiently familiar with physical healthcare to be credible to patients – many of whom may not accept a psychological component to their physical symptoms and therefore the need for psychological therapy.’

So, in the future, it seems that your local hospital MUS service will be standing by at all times to whisk you away from the parts of the hospital where you might get medical assistance and take you somewhere nice and quiet where you can focus on the important business of working out which psychological therapy you need.  I’m afraid I do not find this reassuring.

Imagine a crowded A&E department on a Saturday night. Imagine the pressure to cut down waiting times and the shortage of hospital beds. The pressure on staff to dismiss a quota of patients as MUS and bundle them into a side room for CBT is going to be enormous. It’s certainly an easier option than finding something physically wrong and fixing them And indeed, will there be a fine to pay if they don’t don’t come up with the specified quota of MUS patients for the evening? A specified quota which, to take the figure from NHS Choices, would be no less than fifty per cent.

And what are we supposed to make of this bit: ‘the therapists would be sufficiently familiar with physical healthcare to be credible to patients’? Am I  wrong in getting the impression here that these psychotherapists are going to pretend to be doctors or something? What are they going to do: hang stethoscopes round their necks? Isn’t that illegal? At the very least, this seems to me to be an example of a national NHS document deliberately advising health professionals to mislead patients. Or am I being unfair?

Now, I can imagine why doctors might want to bear this MUS thing in mind for a small minority of their patients, but the guidelines seem to suggest it should be a primary consideration all the time. Look at this excerpt from another piece of advice for doctors, this time aimed at primary care. The Treatment of Medically Unexplained Symptoms in Primary Care – A Review of the Literature from ‘Mental Health in Family Medicine’ (2010) advises:

‘A quick and easy method for carrying out a mental state examination in primary care is the Look, Listen and Test schema. This schema utilises the observation and communication skills already possessed by GPs to enable the GP to develop a formulation by observing the patient’s behaviour and activities from the moment they enter the consultation room, by listening to and evaluating the content of the speech to identify underlying themes of depression, anxiety or paranoia, and by encouraging GPs to test severity by using questionnaires developed to evaluate mood and anxiety disorders. Once depression has been diagnosed, the GP should prescribe the standard dose of selective serotonin reuptake inhibitors (SSRIs) or tricyclic antidepressants (TCAs) available in their geographical area of practice.’

The reason for this assessment of mental health, of course, is that many  people with MUS are said to suffer with depression or anxiety. If the doctor can identify these problems, therefore, you’re well on your way to a MUS diagnosis. So while you’re talking about the abdominal pain you’re getting, your doctor is apparently sitting there trying to decide if you’re paranoid.

I can’t help wondering if it is really in the patient’s best interests to have the doctor’s attention deflected in this way? If a patient is  suffering say, in this case, abdominal pain, is it not sensible to focus on the abdomen, at least to start with?  Is there not  a danger that in their zeal to identify the 45% of their patients who have MUS, doctors may overlook some genuine physical illness?

I have other concerns about diagnosis- and about MUS in general – but I’ll save them till next time, I think. There’s plenty to go at I’m afraid. But for now I’d like to close this post by touching on an aspect of MUS which particularly concerns me.

The Guidelines for Commissioners identifies not only chronic fatigue syndrome but also myalgic encephalomyelitis as MUS conditions and patient advocates have quite rightly raised concerns about this, pointing out that ME has been recognised by the World Health Organisation as a neurological condition for a great many years. While I agree that this is important, I wonder if it is also overlooking the most important threat from MUS?

In the future, will it matter whether ME is designated MUS or not?  Will it matter whether NICE recommend CBT and GET for ME or not? As more is discovered about ME and the imposition of psychological therapies is made more difficult by the growing weight of evidence against them, will the diagnosis ME – and even CFS – become too troublesome for the powers that be to use any more? Far better, perhaps, from their point of view, to shift new patients off into the vague morass of the ‘MUS’ label, where CBT, GET, and other psychological therapies can be used without fear of interference from those who insist on researching the truth of our condition.

 

 

 

An Offer You Can’t Refuse

In the previous post about the NICE Guidelines revision, it was reported that Prof Mark Baker of NICE had raised the issue of the right of patients to refuse treatment, in this case with CBT and GET in mind. Steve, who frequently contributes to this blog, left the following response in the comments, pointing out that our system does not in reality allow patients this choice. I think it is – unfortunately – spot on, so I’m giving it a post of its own by airing it again here.

Over to Steve:

It is being rather naïve or even ‘economical with the truth’ to say that patients are at liberty to decline offers of CBT/GET (or any other treatment). In reality, you are being made an offer you *can’t* refuse, whether this is theoretically allowed or not.

The least that will happen is that your notes will be marked that you are uncooperative and ‘refused’ treatment. By this simple method, every NHS person you meet thereafter is likely to be wary of you, or even downright prejudiced against you, and you will go to the back of the queue for everything you ask for, and any time you turn up at A&E.

Furthermore, even if you say you will go along with the treatment even though you do not hold out much hope that it is of any use, you can then be listed as ‘treatment resistant’, by which ploy the ‘therapists’ and their ‘treatment’ are absolved of responsibility when you fail to improve.

Another favourite patient dissing habit is to say that you ‘deny’ having such and such a symptom, rather than that you don’t have it: anything to make the patient look bad.

The patient really cannot win, any more than they could going up against the Mafia: You cannot refuse.

(Recently, I tried to endure yet another gastroscopy without anaesthetic. I’ve managed this several times before, but this time I could not stop my stomach flinching against the scope in a way that was likely to be doing damage, so I had to signal them to stop. This was logged as a refusal, despite me having been told to do this if there was a problem, at the start of the procedure.)

In the worst case scenario – if your reputation is particularly bad, from trying too hard to get help to get better – any hint of a ‘refusal’ can be used as a pretext for having you sectioned in order to make you take the ‘treatment’. This actually happened to me even though I had previously organised, on my own instigation, CBT with a Kings’ therapist, but my local PCT had refused to fund it! I had also organised a bed at the then Queens, Romford, inpatient unit, but the PCT had refused to fund that either. After over three years wasted in the local psychiatric services, I was thrown out (though I knew I was too ill), with the advice that I should try the unit at Romford – which had closed down two years before, for lack of patients, due to PCTs not referring out of area! You could not make this stuff up. :/

So: while, in the ideal world, patients may, without prejudice, exercise a right to refuse, in *this* world. they will be scapegoated for life, and, quite possibly, even worse.

Steve has subsequently shared a bit more with me about his experience as a (wrongly diagnosed) patient in the mental health system:

Another point I didn’t make about the right to refuse, was what happens once you are admitted to a mental health facility: Everyone is supposed to have a ‘care plan’ that they have to agree to follow, but these are more like confessions they try to trick you into signing, than anything designed to help the patient.
 You are supposed to come up with compromise plans of things you can do and things you can’t, but, if you say you can’t do something, they just treat it as non-cooperation, no matter how clearly you explain the reason. Most of the time, in my case, it was because they did not agree that my physical illness was real, so, if I said I couldn’t hoover because it left me gasping for breath, I was refusing treatment — even if I’d been doing it all the time I could get breath.
These ‘care plans’ also get personal about what ‘I agree to do‎.’ They are like what we used to have to do in detentions at school when given ‘lines’ to write as punishment. In my case they stated that I was a hypochondriac, every time. And every time, I wrote on the form that I could not sign because I was not a hypochondriac and signing a false confession would make a liar out of me. Nevertheless, the forms still went forward as ‘evidence’ of my ‘treatment resistance’ and ‘non-cooperation’.
Even if I pushed myself to do an exercise program that I worked out for myself: when I got so far, and then, inevitably, came the crash, all my progress and ‘cooperation’ up to that point, was as nothing, and I was‎ ‘resisting treatment’ all along.
You really can’t win if you are physically ill in a mental unit. Whether you try to cooperate or not, if you are physically ill, you will always end up put down as a trouble-maker when you can’t do the physical things that the actually mentally ill people around you can do.
Your reputation precedes you wherever you go, and as soon as nurses and other staff look at your notes, you are likely to be greeted with a scowl, unless you are very clearly in serious trouble that they can see you aren’t faking or imagining.
Steve goes on to say that things have improved since he got a better GP, which goes to show how important your GP’s attitude can be. The expertise (or otherwise) of GPs concerning ME has been the subject of much of my Twitter feed recently. I may continue that discussion in the next post here…

The NICE Guidelines – Starting Again?

N.B. Please sign the NICE Guidelines Committee petition – see below.

There was some encouraging feedback from the recent NICE ME/CFS Guidelines Stakeholder meeting, an early milestone in the long process of revising the guidelines. But was such encouragement justified? I wasn’t there myself, so I am grateful to those who attended on our behalf. Blogger and patient advocate Sally Burch reported that Guidelines Director Prof Mark Baker declared: “We’re going to tear it up and start again. We won’t allow it to look the same” while Prof Jonathan Edwards reported as follows (writing in the Science for ME forum):

“What intrigued me most was the elephant in the room – the reason why we were there at all, which was not mentioned once by the speakers from the floor and I suspect hardly at all even in the groups – the need to remove recommendations for CBT and GET. It nevertheless became clear that the NICE staff were absolutely clear that this was why we were there and that they had taken on board that this was not an issue for a few minority activists but essentially for all patients. At our table the facilitator said ‘I presume everyone here is agreed on that’ – despite the fact that a paediatrician and an occupational therapist were present who I suspect may not have realised this was why we were there and for whom these remained standard practice”.

All this talk of ‘tearing it up’ and scrapping CBT and GET was less in evidence however, in the letters which Prof Baker exchanged with Kathleen MCCall (who was representing the Trustees of Invest in ME). Writing in advance of the Stakeholder meeting, Prof Baker wrote: “I appreciate that the existing recommendations are a matter of concern to some patients and groups and we will give some consideration to whether we need to modify or omit any of the existing recommendations during the development of the new guideline”.

This does not exactly sound like ‘tearing up and starting again’ so when the feedback from the meeting emerged, Invest in ME wrote again to question the discrepancies. This time, Prof Baker’s response was of particular interest. He wrote:

“I did indeed say that we will fully replace the guideline and start again…. However, it does not mean that we reject everything that is in the current guideline.”

So this sounds like parts of the guidelines are to be torn up then reinstated, which is easy enough with a roll of sticky tape but a bit confusing for those trying to gauge the mood music at NICE. Prof Baker goes on to explain:

“The problem is, I believe, in the unthinking and ill-informed manner in which the recommendations are imposed on people for whom they are not intended and/or not suitable… I was struck by some of the stories at the workshop about the misuse of the current recommendations and the disturbing extent to which they are imposed on people who are unlikely to benefit from them and for whom alternative approaches would be sensible… The current wording makes clear that patient agreement is required but I imagine that consent is not usually sought and that patients are not considered to have rights to refuse (which they invariably do have in fact).”

So it seems that Prof Baker is at least convinced of the need to safeguard severely ill patients, who do indeed all too often have GET imposed upon them – in clear violation of the existing guidelines. This crucial change is to be encouraged, of course, as is the need for all patients to be informed they have the right to refuse treatment. How exactly this is to be achieved is another matter however. As “the current wording makes clear that patient agreement is required”, what do you do to ensure such agreement is sought? Perhaps the addition of the words “we really mean it this time” in bold print would do the trick. The wholesale removal of GET from the guidelines would be more effective, I suspect, but to judge by Prof Baker’s letter to Invest in ME, that doesn’t appear to be on offer.

He says: “scrapping the entire guideline now would be massively counter-productive as it would almost certainly result in the withdrawal of the already dwindling number of services available to people with ME. Therefore, a rather more limited approach would be required to protect what is good whilst modifying what may be harmful”.

So in spite of saying he wants to tear the whole thing up and start again, Prof Baker clearly believes that bits of it are good and need to be protected. I can’t avoid the growing suspicion that these bits might include CBT and GET. Indeed, if not CBT and GET then what? A large part of our problem is that when it comes down to what purports to be ‘evidence-based’, there isn’t anything else. Of course the ‘evidence’ for CBT and GET is extremely unconvincing, as David Tuller and others have illustrated time and again, and the reason there isn’t the evidence for anything else is that CBT and GET – and the misapprehension about the condition which their adoption has brought into being – have effectively put paid to biophysical research for many decades. This sad circumstance may give us the moral high ground – from the perspective of those who understand – but it doesn’t actually help.

As Jonathan Edwards puts it: “All in all it seems to me that something important has been achieved but there is still more work to do. NICE are very clear that the great majority of patients believe that CBT and GET are worse than useless. They realise that a committee must not be made up entirely of psychiatrists. However, when the committee comes to look at the evidence the only evidence for treatments working they will find will be on CBT and GET. It is going to be hard for them to not at least mention that there is supposed to be some evidence. Hopefully that will not be followed by a recommendation. However, I sense an attitude even amongst physicians and paediatricians that if CBT and GET are not available they will have nothing to offer. A lot of doctors find that uncomfortable. They should not but they do. So there will be a tendency for CBT and GET to remain in the guidelines even if watered down. That will depend to a degree on who is on the committee. That needs some thought. Applications are being taken in June and July.”

So yes indeed, the personnel on the committee will be of vital importance. Graham McPhee, John Peters, Sally Burch and numerous other patient advocates have written a letter to NICE requesting that the committee members are chosen with openness and integrity. They have also produced a petition which anyone can sign. Over 2,700 have done so already. If you haven’t signed yet, please consider joining them.

This is important. As Jonathan Edwards says, doctors feel uncomfortable if they have nothing to offer. This unfortunate fact is the reason why so many patients with physical illnesses over the years have been treated as though they have a mental health issue. It probably won’t help the patient but it’s better for the doctor than feeling powerless.

Sad to say, CBT and GET may remain in the guidelines for this reason, if for no other. They haven’t been torn up yet. We can’t even be sure that Prof Baker’s proposed amendments to avoid the inappropriate imposition of these ‘treatments’ will be acted upon, as he is due to retire before the new guidelines are finalised.

It is good that many patient advocates attending the meeting left with a good feeling about it but, as I am sure they realise, the battle is far from over yet. As a starter, we need the right people on the guidelines committee. Don’t forget to sign that petition…

Update: Apologies for my previous PS about the Royal College of Physicians (which I’ve now removed). It turns out I was quoting the wrong Royal College from the table. I hate to spread misinformation so many thanks to Annie who left a comment to set me straight. Nevertheless, as she points out, there is no reason for undue confidence in the RCP who are to take a leading role in the guidelines revision. Annie writes as follows:

“Excellent summary of where things stand so far with the review of the NICE guidelines.

“One point though the worrying comment you cite from the stakeholders comments during last summer’s consultation exercise was made by the Royal College of GP’s, not the Royal College of Physicians if I am reading the table correctly on page 89? Nonetheless, the Royal College of Physicians said they endorsed the comments of the Royal College of Psychiatrists and the neurologists whose submissions were poor and inaccurate and did not want the guidelines updated, so I am still not filled with confidence having the Royal College of Physicians so heavily involved.”

 

Swings amongst the Roundabouts

Hillsborough Law – Shifting the Balance in Favour of Truth

Continue reading “Hillsborough Law – Shifting the Balance in Favour of Truth”

Spotlight on GETSET Julie