Tag: FND

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.

 

 

The Cult of MUS

This post (in response to a new paper promoting the use of CBT for IBS) is by my colleague Couch Turnip and originally appeared as a comment here: http://www.virology.ws/2019/04/15/trial-by-error-crowdfunding-week-2-and-more-sharpe-and-chalder/ (with some changes by the author)

For those who are new to this issue and may be unfamiliar with some of the acronyms,

MUS – Medically Unexplained Symptoms

BPS – Biopsychosocial

IAPT – Improving Access to Psychological Therapies

This MUS cult is so dangerous. It’s flavour of the decade because, apart from being a whacky belief system, it is also an economic management model that has been built on the management model for ME/CFS. The BPS cabal have succeeded in depriving ME/CFS patients of care, proper investigation, research and the chance of effective treatment for far too long, and now they’re extending the same model to everyone else, and especially to those who have unexplained symptoms. (That’s just about everyone who goes to a GP before they get diagnosed.) What better way is there for governments, health services and insurance companies to save money than to tell people that their symptoms are due to psychological problems and deny them biomedical care on that basis from the outset?

The risks should be obvious (well you’d think). The differential diagnosis for IBS includes – inflammatory bowel disease (IBD), endometriosis, GI tract cancer, ischaemic colitis, giardiasis and coeliac disease. On the basis of a rushed 8 minute consult GPs are to send their patients off for telephone CBT / IAPT instead of referring them to secondary care. The UK already has a poor track record of diagnosing cancers at an early stage, with patients often having to go back to their GPs many times before the correct action is taken, so an additional delay for CBT could well be catastrophic. And IBD is often misdiagnosed as IBS. Speaking from recent experience, if gastroenterology consultants are incapable of diagnosing IBD from a patient’s history then what are the chances that GPs will get it right? This is shoddy science leading to dangerous medicine, and unfortunately this model is taking off across the globe.

What started out looking like a cruel vendetta against ME/CFS sufferers has morphed into an economic strategy with global reach. But this has been in the planning for a long time. It is not an underestimate to say that millions are now at risk.

Going Back in Time…

When the ‘Guidelines for Commissioners of Services with Medically Unexplained Symptoms‘ document was first published a year or so ago, there were those in the Science for ME forum who were sceptical about whether the project was viable. Prof Jonathan Edwards commented: “I actually think this guidance will fall completely flat. No patients are going to want to be referred to a clinic for MUS. Moreover, no psychologists or OTs are going to want to work in a clinic for MUS.”

However, forum member Tab Hoarder was quick to correct this viewpoint. She had direct experience of a MUS service in action and was in the midst of it even as she responded:

“I am approaching 5 months spent living in an inpatient ‘neuropsychiatric’ rehab unit, where the BPS model is used to treat ‘functional’ disorders. Yes these terms are fancier than ‘Medically Unexplained Symptoms’ but the core principals are the same. Let me tell you, this MUS bandwagon has legs. It will go far. Patients here are delighted with their care, feel they are being taken very seriously at last, and are totally open to all the repressed trauma Freudian speculation. When I try to spark some debate about what goes on here, I am met with smirks, rolled eyes, and awkward silences. Patients and staff alike view me as a precocious kid with a ‘persecution complex’. If you start talking about NHS shortcuts, big pharma etc you’re just seen as a conspiracy theorist.

“As for the staff, yes there will always be psychs, OTs and physios to fill these roles. Believe me. The therapy team here are 99% white, in their 20s, and even some internationals (Aussie, French). This place has a national reputation. These are hotshot psych grads, moving to the Big Smoke on what I assume is a comfortable wage, cutting their teeth on some serious psychobabble. It’s not bottom-of-the-heap work to them. Quite the opposite, they consider this cutting edge. They boast endlessly about their long waiting list and high success rates. All the outcome measures used are as subjective as it gets. We are constantly drenched with rhetoric of road-to-recovery, progress, rehab, goals, coming out of your comfort zone and blah blah blah. It’s re-education.

“MUS clinics will not be the feature of a gritty exposé, hitting tabloid front pages. They will get away with it and dress it up as life-changing treatment like this place does. Very scary, and very worrying. Just think of the amount of undetected organic health problems being neglected. It’s like regression, like we’re going back in time, denying the existence of modern medicine.”

Those final words of Tab Hoarder’s account seem to hang in the air like a chilling warning. Can it really come to this?

But this seems to be the way things are going. So many people seem to be willing to embrace MUS because it’s a simple answer to a complex question. Rather than disentangle the complex biochemistry of medical conditions that are not understood, all you have to do is delve into the patient’s story and focus on a potential source of trauma. It won’t be hard to find because – let’s face it – all of us have them. Then you apply the CBT that you learnt on your inexpensive six month training course and that’s the problem sorted. A high rate of success is guaranteed because all you measure is whether the patient says they feel better – and you’ve already told them they do as part of the therapy. Most of the patients embrace the concept of MUS as well, because after months and possibly years of being told there’s nothing wrong with them because ‘all the tests are negative’, they’re finally being given an explanation and the hope of a cure.

So MUS is simple, cheap to treat, and generally convenient for all concerned. Who would possibly be so churlish as to argue that the concept is fundamentally flawed: that diagnosis of physical illness will often be overlooked or delayed – with damaging and sometimes fatal consequences.

I asked Tab Hoarder if there were other people on the ward with M.E.

“No,” she said, “I am the only person with an ME diagnosis, though they hate the term. The psych hates the ‘myelitis’ because he believes there’s no evidence of spinal cord inflammation. Everyone else on the “functional pathway” has FND or Functional Neurological Disorder, including lots of ‘medically unexplained’ seizures. People here are pleased with that term, don’t believe it’s a dustbin diagnosis, and even referenced that Jon Stone guy mentioned on your blog.

“There is also an “organic” pathway here. These patients generally have epilepsy or a brain injury. They are still being treated with the BPS stuff.

“Like you, I think all this functional/organic stuff is stupid, and hopefully the future will be a place where these terms don’t exist and all conditions are treated biomedically.”

Such a plan would be the sane alternative, but it does not seem to be likely any time soon. Things seem to be headed in the opposite direction. Psychiatry is subsuming neurology, not the other way round.

I owe Tab Hoarder an apology. I obtained her permission to use this account of her inpatient experience on my blog almost a year ago, intending to include it in one of the MUS posts I was going to write, but somehow or other up until now it never quite seemed to fit. Now, after the previous post on FND, it fits only too well, I’m afraid. A year ago, the fact that most of the patients in the ward had a diagnosis of FND made little impression on me. Now it is all too obvious confirmation that the FND strand of the MUS strategy was already up and running back then – and evidence also (albeit anecdotal) that even those who are accepted as having a physical condition can also be subject to the BPS regime. It makes you wonder if there will soon come a time when all neurological patients – perhaps indeed patients of all kinds – will be expected to undergo the search for buried trauma – just in case..

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.

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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.