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.

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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.

How Many Times Must a Story Be Told…?

Sorry I’ve not been blogging recently. I put the blog to one side to concentrate on another project but I didn’t realise how long it would take. Needing to take breaks every five minutes to replenish my brain when I’m writing doesn’t make for speedy progress. Today, however, it has been May 12, ME Awareness Day, and I managed to share a link to Robert Saunders’ excellent ME-related version of Dylan’s ‘Blowing in the Wind’ on my (mainly non-ME specific) Facebook page. I read what I’d written to introduce the piece again just now and decided it was worth sharing it here too. If you’re involved in the ME world in some way, you’ve probably come across Robert’s splendid video already, but if not then do please take five minutes to listen – and maybe to share it with others.

Here (for a change) is the non-Facebook version of Robert’s introduction to the video.

Even if you think you know something about ME, some of the quotes used in the video may surprise you:

‘I split my clinical time between ME/CFS and HIV and I can tell you if I had to choose between the two illnesses, I’d rather have HIV.’ – Dr Nancy Klimas, Director, Institute of Neuro Immune Medicine, NSU.

‘People with ME are more disabled and have a lower quality of life than people with most other chronic illnesses including heart disease and multiple sclerosis.’

‘When the full details of the PACE Trial become known, it will be considered one of the biggest medical scandals if the 21st century.’ Carole Monaghan, UK MP

The PACE Trial spent £5m of UK taxpayers’ money and purported to illustrate the effectiveness of graded exercise therapy for ME. However, it was eventually discovered to be so full of flaws that it is now being taught in some university courses as an example of how not to do research. In spite of this, PACE is still highly influential worldwide, including here in the UK, its researchers being so embedded in the higher echelons of the medical establishment that mere facts seem to do nothing to damage their ‘credibility’ in the eyes of their peers.

Time and again, the faults and subterfuge which lie behind PACE have been laid bare, first by patients – many working from their sick beds – and more recently by commentators such as Dr David Tuller who have taken the trouble to look at the evidence and understand that the trial, and the biopsychosocial theory which underlies it, need to be exposed as the sham that they are. Time and again, the argument is won, and the PACE researchers are left mumbling the same excuses which didn’t hold water the last time around, yet to change the consensus view of the illness appears to take decades rather than years. Press coverage is slowly improving but the PACE researchers have a powerful lobbying group, the Science Media Centre, on their side, and though journalists are often well meaning, their idea of balance seems to be to present both sides of the argument, irrespective of where the truth may lie. The equivalent of most articles about ME would be a feature on the shape of the planet which gave equal time and weight to the views of the Flat Earth Society.

As the song puts it:

How many times must an idea fail

Before it is seen to be flawed?

How many flaws can a Trial embrace

Before it is seen as a fraud?

So the process of exposing the truth is an arduous one and of course people with ME have little energy to spare. We fight the illness as best we can but it is a cruel truth that we also have to fight an intransigent medical establishment. Thank goodness for those few healthy people who are willing to help us.

The slow process of getting to the truth has to go on. Graded exercise as promoted by PACE is very dangerous for people with ME. It can – and does – leave patients bedbound, sometimes permanently so. Not only that but the persistent presence of the biopsychosocial lobby means that most research money, especially here in the UK, goes into various ‘rehabilitation’ research programs such as PACE rather than into much needed biomedical research.

Of the 14 million people worldwide estimated to have ME, about 25% are housebound or bedbound, many as a result of graded exercise programs. Many of these severely affected can’t tolerate light so they spend their lives in darkened rooms. Some are not even well enough to talk to those close to them, so they Iive lives of total isolation.

The photos in the video illustrate the worlds of a solitary room in which many such people must live. When the song talks of people screaming in the dark then, it is not exaggeration – except that in reality the scream will most likely be a silent one.

Thanks for listening and reading. Please help by sharing this. Thanks, too, to Robert Saunders and all involved in making this powerful video.

How many times must a story be told

Before you will see what is true?

Further reading:

David Tuller’s initial analysis of PACE. Just reading the summary gives you a good understanding of the scale of the ‘errors’ involved:

Out of the Blue: an account of what it can be like to go down with ME – and a few useful links (from the Spoonseeker blog):

 

Getting Airborne

Steve Hawkins, who often comments here at the blog and quietly does a lot of useful activist stuff behind the scenes, left the following comment/proposal on the OMEGA petition site (and added it here in response to the previous post). I thought it was worthy of a wider audience so I’m reposting it here to kick off today’s blog:

‘It seems unfortunate that there has to be a petition of this kind against what, in the right hands, and with careful preparation of protocols in advance, would undoubtedly be a gathering of very useful data; and I feel uncomfortable that this will discourage some of the very able researchers and research teams who have been brought into the MEGA group but had no part in earlier ill advised research proposals; but it seems that something of this sort will have to be done, to ensure a complete new start, and clean break with the discredited ‘science’ of biopsychosocial egotists.

‘I apologise to the, well-meaning, I’m sure, Prof. Holgate, and those others who I fear have had to be reticent in criticising poor research, because of the binding conditions that were attached to membership of the Research Collaborative, under the direction of the partisan ‘Science Media Centre’, but the time really has come to return to both freedom of speech and information in this research field, after the gambit of crying ‘harassment’ after any honest questioning, has been so clearly shown up for what it was, in the courts.

‘I would advise that a new steering group be set up for a large and inclusive, data gathering and biomic sequencing and typing study with the major emphasis on the severely affected, who are the most likely to yield clear differences worthy of more intensive study. By all means collect data from a quota of less severely disabled/sick patients as well, but only to the number necessary to provide a control match for each of the seriously ill study subjects. A similar number of healthy controls will also be needed.

‘Thus the size and expense of the study should stem from the maximum number of seriously ill participants for statistical certainty… (plus controls). If that turns out to be a very big cost Continue reading “Getting Airborne”

More on MEGA

Following on from their original email and Professor Holgate’s response, Leeds ME Network have sent a further email to Prof Holgate of CMRC about concerns regarding the proposed MEGA project:

Many thanks for your swift response to my previous email regarding the MEGA study and for passing our concerns on to those who are preparing the bid for funding…

It is heartening to hear from your email that the inclusion of very severe patients is under discussion by the MEGA team. I notice, however, that you mention ‘financial limitations’ in this context. The reaction of other patients with whom I have shared this issue echoes my own: that severely affected patients should be the priority. People with ME/CFS in general are offered little in the way of treatment but most of the severely affected are abandoned entirely by doctors. They are left to lie in darkened rooms, often unable even to sit up in bed or converse with their loved ones, and without any prospect of medical intervention. I’m sure you know all this. Though I cannot claim to have taken a scientific sample of opinion, the overwhelming impression I get from patients is that if there are financial constraints regarding MEGA then these should apply to the overall number of samples taken rather than be focussed on the severely affected, who are the ones most in need of help. I am reminded of Prof Ron Davis’ observation that data from severely affected patients is the most important ‘because their biology would show the greatest differences compared with healthy controls’. It seems incongruous to be envisaging such an enormous study yet even at this stage, while the grant submission is still being prepared, to be talking about insufficient money for full inclusion in the study of those most in need of help.

A further issue regarding patient selection occurred to me while reading through the ‘questions and answers’ update on the MEGA petition website:

The update says: “The only way to do this is to recruit patients through NHS clinics throughout England.”

As I described in my previous email, taking patients from the clinics alone would produce a sample of patients biased towards the less severely affected. Continue reading “More on MEGA”

Making the Most of MEGA

In an earlier post, I published an email from Leeds ME Network to Sonya Chowdhury, CEO of Action for ME, expressing reservations about the presence of Profs White and Crawley on the team of the proposed MEGA biomedical research project. Here is the latest update from Leeds ME Network:

In response to our letter to Sonya Chowdhury, we have just received what appears to be a standard letter referring to the latest updates on the MEGA petition page at Change.org. Leeds ME Network have now responded in turn with the following email, slight variations of which will be sent to Ms Chowdhury; Stephen Holgate the CMRC Chair; Dr Charles Shepherd at ME Association; and ME Research UK. Our email follows:

We are grateful to the MEGA team for letting us know about the proposed CFS/ME biomedical research project. We believe it is very important that this study goes ahead but in view of some of the less than helpful research which has taken place in the past (in particular, of course, we are thinking of the PACE trial) we hope you will understand why we patients are keen to voice our concerns about the proposal.

1) The impression has been given that patients for the study group will all be drawn from the NHS Clinics. It seems clear that such a sample would be heavily biased towards less severely affected patients and that the sample would therefore be unrepresentative of the total patient population.

The reasons for this are as follows: Continue reading “Making the Most of MEGA”