How Can 10 Metres and a Wheelchair Make So Much Difference?

Here’s another post written not by me but by Couch Turnip, who originally left it as a comment on the previous post ‘The Cult of MUS‘ (which was also written by her!)  As so often with the stuff she writes, I thought it deserved a wider audience. It seems to summarise very powerfully the shortfall in both logic and compassion which lies at the heart of MUS. I don’t know which it is hardest to comprehend: that those in authority should encourage this change in mindset or that those required to make this change should apparently be so willing to embrace it.

It’s hard to believe that the practice of medicine itself would be manipulated and used as a tool to cut costs, but that is unfortunately where we’re at now.

I had an experience last summer that will stick in my memory. The attitude of hospital staff towards someone I was accompanying seemed to change dramatically with their perception of the situation. When the (young adult) attendee was clearly unable to walk and was struggling to stand up then staff behaved in an exemplary manner towards them – they appeared caring and sympathetic, rushing to help and locating a wheelchair in a hospital where such basic equipment seemed in very short supply. But on wheeling the patient into a different department about 10 metres away, the attitude of the staff was noticeably different. Here the patient, now marginally less compromised on account of the wheelchair, was treated as if they were catastrophizing their situation and I, as the wheelchair pusher, was their facilitator or accomplice in this. When they were struggling to get out of the wheelchair for an examination/investigation, I was told to get them to hurry up and move. When I slightly raised my voice in indignation, a security prescence appeared at the door. How can 10metres and a wheelchair make so much difference?

Whatever happened to real compassionate care? What happened to believing the patient and taking their symptoms and situation at face value rather than reading all sorts of pseudo-psychology into it? What exactly are they teaching medical staff about patient management these days? I shudder to think.

Since Couch Turnip wrote the above, the case has emerged of Gigi, a young woman with ME who is being kept in a psychiatric ward against her own and her parents’ wishes. ME rather than MUS, but you might call it more of the same. You could call it ‘institutional disbelief’.

By the way, Couch Turnip didn’t leave the only comment on the previous post. There was also a very good one from gildedcage, also well worth a look.

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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.

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

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.

 

Letter to Professor Watt of MRC

This letter from Professor Fiona Watt of the Medical Research Council in support of the PACE Trial appeared a few days ago in response to the Times article about the growing pressure on The Lancet concerning the trial:

CHRONIC FATIGUE

Sir, Further to your report “Call for review of ‘flawed’ ME research”(Aug 21), as funders of the Pace trial we reject the view that the scientific evidence provided by the trial for using cognitive behavioural theory and managed exercise in the treatment of chronic fatigue syndrome (also known as ME) was unsound. The Pace trial was funded following expert peer review, was overseen by an independent steering committee, and its published findings have also been independently peer-reviewed. Other research groups have drawn similar conclusions. Chronic fatigue syndrome/ME remains a priority for the Medical Research Council (MRC), and it is important that researchers are not discouraged from working on the disease because of concerns that they could be subject to the level of hostility that Pace researchers have experienced. Medical research can only flourish when there is mutual respect between all parties.

Professor Fiona Watt Executive chairwoman, Medical Research Council

There have been other responses from patients. Here is mine, which I decided to send directly to Prof Watt.

Maybe she will see it. Maybe she will read it. Maybe she will do as I ask! I’ve sent it anyhow. You don’t win the lottery if you don’t buy a ticket…

Dear Professor Watt,

Like many patients with M.E. I was surprised and disappointed by your letter to The Times wholeheartedly supporting the PACE trial. There are so many misconceptions in the letter that it is clear that you have not investigated this matter yourself but have – apparently- assumed that what the PACE authors tell you about it is correct and what patients tell you is not. I can only assume that this is because they are doctors and we are merely patients.

Yet you say in your letter that ‘medical research can only flourish when there is mutual respect between all parties’. I would certainly not disagree with that. Please then show patients the respect of being open to the possibility that what we (and indeed many distinguished researchers and other informed parties) say about PACE may actually be correct.

I am not asking you to take us at our word, but please look into the matter yourself instead of simply believing what you are told by the PACE authors and their friends. It will not take you long. I have provided a few references at the end of this letter which you will find useful. For the sake of the patients you say you wish to respect, please take the trouble to do this.

Thank you,

Useful references:

Rethinking the Treatment of Chronic Fatigue Syndrome – A Reanalysis and Evaluation of Findings from a Recent Major Trial of Graded Exercise and CBT by Wilshire et al. – Jan 2018 (A comprehensive re-evaluation of PACE following the release of data from the Freedom of Information Act Tribunal.)

Journal of Health Psychology Vol 22 No.9 Aug 2017 – A Special Issue on PACE. “On the basis of this Special Issue, readers can make up their own minds about the merits and demerits of the PACE Trial,” writes Editor David F Marks.

A letter to The Lancet signed by over a hundred scientists, clinicians, academics, MPs and other experts plus over sixty local, national, and international patient organisations, calling for an independent re-analysis of PACE and setting out the reasons why.

The August 2016 PACE Trial Freedom of Information Tribunal Judgement has useful information about so called hostility to PACE researchers, an unfounded allegation which your letter unfortunately perpetuates.

Two notes relating to this issue:

  • Allegations were made at the Tribunal by a representative of the PACE proponents that ME patients, described as ‘activists’ were ‘borderline sociopathic and psychopathic’ and posed ‘a serious threat of violence to trial participants and researchers’ but the Commissioner described these as ‘wild speculations’ which did the representative ‘no credit’ (see pages 22 and 36). PACE researcher Prof Chalder accepted that ‘there had been no threats made either to researchers or participants’ The Commissioner stated that the ‘assessment of activist behaviour was grossly exaggerated. The only actual evidence was that an individual at a seminar had heckled Prof Chalder.’ (see page 40)
  • Your letter also suggests that researchers might be ‘discouraged from working on the disease because of concerns that they could be subject to the level of hostility that PACE researchers have experienced’. The idea that researchers are being discouraged in this way is another often repeated misconception which seems to be intended to vilify patients. Working for the MRC, you will be fully aware of how little funding M.E. has received over the years. Nevertheless there is research going on worldwide, strongly supported by patients and often funded by them. (Many of these researchers are critical of PACE and have signed the letter to The Lancet requesting its independent reassessment – see above.) Patients do however object – in the form of letters such as this and other peaceful means – to the squandering of funds on poorly conducted research such as PACE, money which is desperately needed for high quality biomedical research into the condition.

Probing the Holes in MUS

This is the second in a new series of posts about medically unexplained symptoms (MUS). The first of these, A Morass of MUS, appeared last time. However, I first looked at medically unexplained symptoms over two years ago in a post called Medically Unexplained Assumptions. In this, I travelled all the way back to the nineteenth century (just like a character from Netflix) to take a look at the case of the unfortunate Mr Le Log, who suffered memory loss, paralysis and seizures after being knocked to the ground by a speeding carriage.

The accident was unfortunate of course but what made things worse for Le Log was that he had no external head injuries. He most likely had internal ones, but at that time medical science did not recognise the existence of such injuries as they didn’t have the technology to detect them. As far as the doctor who examined him was concerned, therefore, there couldn’t possibly be any physical reason for Le Log’s symptoms of memory loss etc. The doctor could only conclude that they were the result of ‘hysteria’.

In the many years since then, similar assumptions have been made about many other presentations of symptoms, such as those relating to epilepsy, multiple sclerosis and Parkinsons disease, to name but a few, yet subsequent advances in technology have revealed that these conditions too are really physical in nature and have nothing to do with ‘hysteria’ at all.

The habit of assuming that any condition which is not understood by doctors  must be a rooted in mental health continues to this day, however. It has been shown to be wrong over and over again, and you would have thought that gradually, over the years, it would have fallen into disuse. But no. The medical profession continue to insist that they already know everything there is to know about illness, so any set of symptoms they don’t understand can’t possibly be a ‘proper’ disease – this in spite of the fact that they really know they don’t know everything, and are happy enough to admit this in other contexts.

The word ‘hysterical’ is rarely used these days, but plenty of other names have come along to replace it in describing such conditions: medically unexplained symptoms (MUS), which we are using here, is one of them, as are the terms ‘functional‘ and ‘somatised’. ‘Functional’ is especially misleading, I think, as it sounds like it is describing a physical fault in a system. (You could almost think that doctors were deliberately setting out to mislead their patients…)

Far from falling into disuse, these terms seem to be gaining in popularity at the moment. As I mentioned last time, up to 45% of GP appointments and half of all new hospital visits are now considered to be due to MUS. This really is an extraordinarily large number, and new MUS services are being encouraged into existence to deal with it all. The IAPT (Improving Access to Psychological Therapies) scheme, originally intended to address anxiety and depression, is now being extended to deal with MUS (and long term conditions). Nimnuan, Wessely, and Hotopf, authors of the paper “Medically Unexplained Symptoms -an epidemiological study in seven specialties” which seems to have been the source of the ‘50% of hospital visits’ figure, announce rather grandly: “It is now time to acknowledge that the management of medically unexplained symptoms is one of the important tasks facing the specialist in internal medicine – indeed, in some clinics, it constitutes the majority of the work.”

Is all this really true? Is the vast mountain of MUS that Wessely et al have brought to our attention real? Sir Simon Wessely’s presence amongst the authors of the ‘seven specialties’ paper was bound to increase my doubts about this, especially bearing in mind his favourable opinion of the calamitous PACE trial. So I was interested to take a look at how he and his colleagues arrived at their figures for the prevalence of MUS .

I found I had a number of concerns:

“Medically unexplained symptoms were defined as any current principal somatic complaint reported by patients for which no definite medical diagnosis could be found by physical examination and appropriate investigation… The physician’s opinion was determined by the final diagnosis stated in the clinical case notes. If the physicians gave a diagnosis of “functional,” or continued to defer the diagnosis because of no detected abnormality, we considered these as indicating that the symptoms were medically unexplained… Case notes were reviewed to ascertain the final diagnosis approx three months after the initial visit.”

So in other words, if the doctor hasn’t come up with an explanation for a symptom in three months, then it is officially “medically unexplained” as far as this research is concerned. The problem for me here is that, in my experience, most diagnoses take longer than three months to obtain, so this three month cut-off seems unreasonable and likely to exaggerate the extent of the MUS problem.

  • The researchers developed a ‘system review questionnaire’ for use in the study but I haven’t been able to find it online. They describe it as follows:

“It consists of 11 main symptoms, which correspond to 13 recognised functional somatic syndromes, with 25 additional symptoms, including somatic symptoms, sleep, and psychological complaints. A total of 27 individual somatic symptoms were enquired about.“

I don’t find that all that easy to interpret, so it’s a shame we don’t have a copy of the questionnaire. But the impression I get is that if a patient has at least one of those 27 individual somatic symptoms which has not been ‘explained’ by the doctor by the time the 3 months are up, then they will be categorised as having medically unexplained symptoms. In my opinion, however, it is a natural part of the human condition to have one or two aches and pains and other bodily malfunctions of unknown origin at any one time. So it seems to me that once again these figures will be inflated. (If you would like to take a look at this for yourself and see if you think I am representing it correctly, then please do so. The full paper is freely available online.)

  • As quoted above, the 11 “main symptoms“ correspond to “13 recognised functional somatic syndromes”. Not all of these are named in the paper but three of them are mentioned in the introduction:  IBS, fibromyalgia, and – you guessed it –  CFS. Well the World Health Organisation classes IBS as ‘a disease of the intestines’, and fibromyalgia as a ‘soft tissue disorder’. They have nothing to say about CFS but myalgic encephalomyelitis is a classed as a neurological condition of course and as the Department of Health apparently believes ME and CFS to be one and the same, a strong case could be made for CFS to be also classed as neurological. I can only presume that a patient presenting with the symptoms of any one of the ’13 recognised functional somatic syndromes’ mentioned would be categorised as ‘unexplained’ by the researchers. However, as the three ‘syndromes’ mentioned are in fact officially recognised as ‘somatic’ (ie physical) conditions, a case could be made that once again the number of patients with MUS are being inflated – and we haven’t even looked at the remaining so called ‘functional somatic syndromes’ yet. The chances are that some of those aren’t really ‘functional’ either. Is it reasonable of the government to recognise medical conditions as physical yet at the same time class them as MUS in the supporting statistics for a major initiative to expand services for such conditions? I don’t think it is.

So where does this leave us exactly? While this isn’t all as clear as I would like it to be, I feel there’s enough here to place a big question mark against these figures. If I was relying on them to support a substantial government initiative, I think I’d want to take a very good look at them first. Likewise the supporting figures for primary care. Has anyone done so? I wonder. They may well have simply relied on peer review to validate the research, but that didn’t work so well for PACE, did it?

While we’re on the subject of diagnosis: last time, I drew attention to some advice for GPs which seemed to suggest they should place undue focus on the mental health of patients presenting with physical symptoms in order not to miss any cases of MUS. If you’ve read the second of my original posts on MUS, ‘Unexplained, Misdiagnosed, Untreated‘, you’ll also know that MUS has been a substantial factor in the misdiagnosis of rare conditions, sometimes causing catastrophic delays in treatment. But there are also other concerns, most notably a gaping logistical gap which appears to lie at the very centre of the MUS strategy as it is described in the Guidelines for Commissioners (the very document which, supposedly, is supposed to kickstart the new range of services for MUS into action).

As I mentioned last time, MUS are described in these guidelines as: ‘bodily complaints for which adequate examination does not reveal sufficient explanatory structural or other specified pathology’. A similar definition was used by Wessely et al in their paper above. All this may seem reasonable enough at first glance, but if you think about it more carefully, you might start to wonder ‘how sufficient is ‘sufficient’ and ‘how adequate is ‘adequate’? As far as I can tell, the guidelines give no guidance on that. They do however warn against the danger of over-investigation. They say:

“Patients are often subjected to repeated diagnostic investigations, and unnecessary and costly referrals and interventions”

and

“Doctors can cause harm by pursuing inappropriate investigations in their efforts to discover the cause of symptoms. Such procedures can exacerbate anxiety. Over-investigation may cause unnecessary damage to healthy tissues and lead to over-treatment, including unknecessary surgery, with all its complications, and in extreme cases more invasive treatments such as urinary catheters and tube feeding, of various types. Doctors may also prescribe unnecessary medication that can lead to side effects, and addiction.”

Forgive me, but that last paragraph reads like a text book example of catastrophising, something I am led to believe is more typical of a MUS patient than a set of NHS guidelines. I suppose a doctor would explain it as follows: “I’m sorry Mr Smith but it’s really best if we don’t give you a gastroscopy to investigate your stomach pains or you’re very likely to end up in bed with several organs accidentally removed, being drip fed unnecessary medication. What would you like us to give you instead to help with your constant agonising pain: CBT or mindfulness?”

I’m not sure this is really striking a realistic balance between ‘adequate examination‘ and ‘over-investigation’. It’s more like freezing to death for fear of catching fire if you light a match.

The truth is that the more adequate the examination, the more likely it is to find sufficient pathology if it is present. But the guidelines stress again and again the need for less investigation. Is there not a danger of an enormous void opening up here, a void into which the physically ill may fall? Those whose pathology is overlooked by tests which turn out not to have been so adequate after all? Always assuming, of course, that they even managed to get a test. ‘Repeated tests’ seem to be especially frowned upon by the guidelines, so if you’ve been tested before, you may not get another chance. The impression given, rightly or wrongly, is that the NHS will no longer cater for patients who develop pathology for which they’ve previously been tested. Unless you want CBT of course, in which case your brand new local MUS clinic will be happy to help.

This is especially concerning in the light of the guidelines’ acceptance that ‘MUS may be caused by physiological disturbance, emotional problems or pathological conditions which have not yet been diagnosed’. (My italics.) For if that is indeed the case, there’s a problem, isn’t there? With all this desire to avoid investigation, how are these conditions which have not yet been diagnosed going to get diagnosed – especially once a patient has been judged to have MUS? I can find no answer to this important question in the guidelines. But it is a life-threatening question and surely one which requires an answer….

I’d like to complete this post with a brief overview of the current situation, as regards both MUS and IAPT. The underlying principles behind the original IAPT scheme seem to me to be praiseworthy: delivering therapies for mental health problems such as anxiety and depression which previously all too often went untreated. There are concerns, however, especially regarding the expansion of IAPT to include MUS and long term conditions. The official guide to this new ‘care pathway’, for instance, cites CFS as a MUS condition, repeating the error from the ‘seven specialties’ paper but this time in a government document; while IAPT as a whole is also under scrutiny following an audit by Michael J Scott which suggests that the therapies used (principally CBT) come nowhere near achieving the 50% curative rate which is claimed for them. This concern is covered in detail in the latest issue of the Journal of Health Psychology (ed David F Marks). 

As for MUS, if we stand back and look at the overall picture of that, is there even greater cause for concern? Not only must we have the same worries about the efficacy of the therapies, surely questions must be asked sooner or later about the vast numbers which are supposed to be affected by this phenomenon and the effect on the diagnosis of physical/somatic conditions if undue emphasis is placed on it.

Put in a single sentence, the question is this: do we have a situation where a massive new initiative is being rolled out to promote therapies with exaggerated efficacy for the purpose of combating an imaginary epidemic, at the same time encouraging doctors to overlook and under-investigate genuine pathologies?

Only asking…