Tag: Jonathan Edwards

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..

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):

 

The NICE Guidelines – Starting Again?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

Looking at the Evidence

As you may know, a few days ago the Journal of Health Psychology published a very important special issue critiquing in depth the controversial, deeply flawed PACE Trial, a study which purported to provide evidence for the use of graded exercise and a very specific type of CBT in the treatment of ME (myalgic encephalomyelitis, also known – misleadingly – as chronic fatigue syndrome or CFS). Congratulations to the journal’s editor Prof David F Marks for taking the trouble to inform himself about the true situation regarding ME. He is one of very few scientists and health professionals who despite having no personal or pre-existing professional interest in the condition has made the effort to look at the facts and realise that – unlikely as it may seem to many – the PACE Trial and similar ‘research’ into ME by those with a fixed biopsychosocial mindset really is every bit as flawed, misleading and potentially damaging as patients have been claiming for years. Dr David Tuller, Prof James Coyne, and Prof Jonathan Edwards are other rare free thinkers who have not been afraid to get informed and challenge the status quo – or to put it another way, to point out that the emperor is naked because that is what he is.

By contrast, those who persist in defending PACE give the impression that they have simply taken the word of the PACE investigators rather than study the actual evidence. Prof Malcolm Macleod, who was trotted out by the Science Media Centre as an ‘expert’ in response to the special issue, seemed only aware of one of PACE’s many flaws and seemed to base his defence of the study chiefly on the ‘doubtful provenance’ of some of its critics. It is another example of people being judged on the basis of who they are, rather than what they say or where the truth lies.

As for Prof George Davey Smith, who left the JHP’s editorial board in protest at the PACE-related special issue, he seemed to positively gloat about his ignorance of ME at last year’s CMRC conference, this in spite of his involvement with the much vaunted though controversial MEGA study, and even referred to it as CSF rather than CFS, apparently mixing up chronic fatigue syndrome with cerebrospinal fluid.

Speaking on Twitter, David F Marks described his disappointment that George Davey Smith did not ‘offer a pro-PACE commentary instead of leaving in a huff’. He (Marks) has offered to debate with PACE supporters in a public forum at any time. I don’t suppose he’ll get any takers. That would put them to the trouble of actually sitting down and informing themselves of the true situation.

Marks, meanwhile, has studied the facts and has drawn his own conclusion. He says: ‘“The many wrongs committed by psychiatry and medicine to the ME/CFS community can only be righted when the Pace trial is ultimately seen for what it is: a disgraceful confidence trick to reduce patient compensation payments and benefits.’ To which I would add: ‘also an exercise to try to protect the reputations of a small number of health professionals who have built their illustrious careers on the back of an unproven ‘biopsychosocial hypothesis’.

Meanwhile the proponents of PACE continue to take the cream of the research money here in the UK, so inhibiting much-needed biomedical progress; unsuspecting patients are given potentially damaging courses of graded exercise; and the number of parents threatened with ME-related child custody proceedings appears to be spiralling upwards, all this fuelled by the unproven biopsychosocial hypothesis.

As The Times article reported with great relish, James Coyne allegedly called the departing Davey-Smith ‘a disgusting old fart neoliberal hypocrite’. This may seem a little harsh but if language like that helps to get the truth about PACE in the newspapers, then so be it as far as I am concerned. And in view of the human suffering which underlies the farce that is PACE, perhaps such language is restrained.

Note: David Tuller’s response to the Science Media Centre’s ‘expert comments’ on the JHP special issue is here.

The OMEGA Petition – Email to Professor Holgate

This email has been sent to Professor Holgate of MEGA. Many thanks to all those who signed. (Whoops! missed a few… Total signatures now updated to 221)

((Please note that we are not the organisers of the OMEGA petition.))

Dear Professor Holgate – We comprise a number of M.E. patients and carers, 218 in all. Please see our signatures at the end of this email..

We are writing because we notice your suggestion in your letter to Professor Jonathan Edwards that OMEGA (the petition opposing the MEGA study) has attracted so many signatures due to the support of Invest In ME. We are writing to assure you that we patients and carers are able to look at the evidence and make up our own minds on such issues.

Here are some of the grave concerns that we have about the MEGA study as it has been proposed. It seems likely that you have heard many of them before but in view of your professed perplexity about the OMEGA petition, we want to make sure you are aware of the issues. For the same reason, we are copying this to the other members of the MEGA team and to those you copied in to your letter to Professor Edwards. We are also sending a copy to Professor Edwards himself, and the email will be posted online at the Spoonseeker blog.

Our concerns about MEGA include the following:

Patients from the NHS CFS/ME clinics (apparently the intended source for MEGA) will not yield a representative sample of people with M.E. The reasons for this include:

  • Most severely affected patients cannot access the clinics and so will not be included in the study.
  • There will be an inevitable selection bias towards the mildly affected because
    • the clinics will tend to select such patients as those most likely to respond to the behavioural therapies on offer, and
    • the more severely affected patients will be more likely to reject such therapies – and hence the clinics – as inappropriate.
  • Other more severely affected patients will no longer be on the clinic’s system
    • either because they have not responded well to the therapies, dropped out, and not been followed up (as feedback suggests is often the case) or
    • they are among the long term sick who are no longer on the system because treatment is time-restricted

There has been a suggestion, following representations from patients, Continue reading “The OMEGA Petition – Email to Professor Holgate”

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”