Tag: P2P Report

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

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

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

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

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

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

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

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

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

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

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

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

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

Just to state a few of them briefly:

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

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

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

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

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

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

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

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

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

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

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

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

Divide and rule.

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

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

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

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

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

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

Notes:

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

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

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

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

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

 

 

My Perspective on the MEGA PAG

At long last, I’ve submitted my list of reasons for resigning from the MEGA patient advisory group to the MEGA team, the other PAG members and a few other interested parties. I would like to be able to share it in full here but unfortunately the confidentiality agreement makes that impossible. So I shall stay with it as long as I can and then add in a few extra comments exclusive to this blog. Well, OK, quite a lot of extra comments…
Here we go…
I joined the PAG in the expectation that we would be able to make a substantial contribution to the design of the MEGA project, in particular the patient cohort selection, about which there had been considerable concern in both the ME/CFS research and patient communities. Recognition and  understanding of ME/CFS has been greatly hindered for many years by the muddled and inconsistent use of a host of diagnostic criteria. This problem was acknowledged by the recent US National Institutes of Health ‘Pathways to Prevention’ Report  and highlighted in a recent paper from the Cure ME UK Biobank team. It is recognised that broad criteria are needed for GWAS, but nonetheless it is of course extremely important  to select the right patients for the MEGA biobank, particularly as they might be used for research worldwide for many years to come. There has been particular concern because the MEGA team Principal Investigator, though regarded as an ME/CFS expert by her close colleagues, did not – to judge from her previous work – appear to have taken on board the importance of such distinctions.
Prior to the formation of the PAG, patient concern was to some extent allayed by assurances about the extensive role of the patient advisory group, both on the MEGA website and in person by Prof Holgate when he addressed the Forward ME Group at the House of Lords.
The MEGA website announced that provisions would be made for the PAG as follows:
We will:
  • use technology to make it as easy as possible to participate, given the limitations of the illness
  • ensure you are clear about your role and responsibilities
  • always treat you with respect and compassion
  • provide you with support that fits with your role and your needs as well as ours
  • always value the role you play in our team and the contribution you make to our work
  • listen to, and act on, feedback that you give to us outlining what we did/didn’t do and why
  • ensure you have the information you need to participate in the wider MEGA team effectively.
At his meeting with Forward ME at the House of Lords in December, Prof Holgate further explained:
  • the selection of patients would not be looked into until the PAG had been convened
  • the PAG would need to get together with the MEGA team to resolve the many queries that surrounded the condition of ME/CFS patients.
  • the PAG’ s method of working would be a matter for the PAG to decide. Each patient representative would be an equal of every other member of the MEGA team
When asked about the inclusion of the full spectrum of patients in samples for the study, Prof Holgate said:
  • this was a discussion the patient representatives would need to have with the scientists
The MEGA website summarised the role of the PAG as follows: “to provide people with ME/CFS, their carers, and people with an interest in ME/CFS, with a full voice in advising and collaborating with the MEGA team to inform all stages of the MEGA study to better understand the biology of ME/CFS. Advisory Group members are asked to contribute to the MEGA study by:
  • actively engaging in the design of the MEGA study and to be participants in its conduct
  • identifying any potential practical issues for participants, questions, gaps or concerns about the study and to comment on study documents and procedures
  • contributing to, and informing, the planning process for securing funding, recruiting participants and disseminating results.”
Sadly, my experience was that the vast majority of these numerous assurances were ill-founded. The reality of the PAG differed greatly from what had been promised.
In the report I submitted, I went on to give examples of numerous ways in which the reality of the PAG fell short of what had been promised, but unfortunately I’m not able to share them here due to the confidentiality agreement. What I can do instead, I think, is to bring in my experience of patient involvement in research into another neurological condition I have. This has involved answering questions about how far people would be prepared to travel to undergo tests, and whether they would be prepared to go without their medication for part of the day while doing so, that sort of thing. In other words answering important but relatively mundane questions about patient participation in the practice of research.
In our discussions amongst ourselves in the PAG, we referred to this as working in a ‘consultative’ capacity, whereby the group would be approached to answer such questions as and when they were needed, an important role yet a very different one from that of collaboration, which was what we had been given the impression would be required from us for MEGA. At the time I left the PAG, some two and a half months in, it was still not clear which of these roles we were supposed to fulfil. We had certainly been told we would be collaborating, more specifically we were to be provided with “a full voice in advising and collaborating with the MEGA team to inform all stages of the MEGA study”. The trouble was that to judge from our experience so far we were really only wanted in a consultative capacity. “To decide on the best colour for the envelopes,” was how I liked to describe it. Which was a joke – but admittedly not all that funny.
Though things were much more complicated than I have been able to describe, it was this uncertainty about the role of the PAG and the failure to get agreement on terms of reference which might have defined it, together with frustration about having such little scope for input into the project, which led to my resignation. Our attempts to get more clarity led to a souring of the atmosphere and it was hard to see how progress could be made. Far from being welcome partners in the development of MEGA, we seemed to be barely tolerated. Three of us felt that the time had come to resign.
My best guess about what happened is that we were always intended to be consultative but when patients protested so loudly about the plans for MEGA as originally announced, the PAG was seized upon as a way to quieten us down: “Don’t worry – the PAG will be there to make sure it’s all done properly!” Prof Holgate even went so far as to tell Forward ME that “PAG members would be the equal of every other member of the MEGA team” which I have to say struck me at the time as neither likely nor even desirable. Personally speaking, as someone who knows next to nothing about –omics, I wouldn’t expect to have the same authority as an –omics scientist on an –omics research project. But I suppose when your mindset is simply to say whatever it takes to get the troublesome patients off your back, you don’t stop to think too much about accuracy.
You’d have thought, though, that they would have had a plan to deal with the situation when the PAG turned up and – surprise, surprise – expected to have, if not the impressive powers they had been promised, at least some say in the matter. Wasn’t it reasonable for us to believe what we (and Forward ME) had been told?
Except perhaps, now I think about it, there was a plan to deal with the situation: to ignore the PAG until the more troublesome members resigned in frustration then turn on the charm with the rest.
So maybe it’s me that hasn’t thought this through…
But I can’t help wondering how the Forward ME representatives must feel about being given such a misleading impression of how things would be for the PAG? When they asked all those questions of Prof Holgate at the House of Lords, would they not have expected a higher degree of accuracy in the replies? Or are we in a situation where anyone in power can say  whatever they like, regardless of the facts? While patients are cast as troublemakers however much truth they have on their side…
Anyway, what happens next?
People have been asking if more resignations from the PAG are likely. My impression at the time was that others were considering it, but now I’m on the outside with everyone else, I don’t really know. According to the latest update on the MEGA website, “enthusiasm among PAG members is high” and since our departure “things have really picked up and are starting to fly”. If, as the website also reports, the PAG really had “substantial input” into the bid then things have changed a great deal for the better. If I’d known I was holding things back so much, I’d have gone before…
After the mistaken impression previously given about the role of the PAG, however, I hope I will be forgiven if I don’t entirely trust the MEGA website. The recent update reported that three of us had left the PAG and that our “ reasons for leaving have been taken on board”. This was particularly surprising as, at the time that update appeared, two of us hadn’t yet submitted our reasons for leaving. The update also stressed the intention that MEGA will apply for additional funding to include samples from the severely affected and that PEM will be a prerequisite for inclusion in the study. All of this, the update announced, had been agreed with the PAG. Well, OK, but both these strategies had already evolved before the PAG was even formed. They could hardly be described as a breakthrough now. If they had found a way to include the severely affected in the initial bid, then that would be news.
On the other hand, the update does at least acknowledge that those affected long term (who may not necessarily be severe) must also be included and it appears there has been some discussion of categorisation of samples. It is not much to go on but perhaps things are taking a turn for the better. It is not before time.
I certainly felt that the PAG had a great deal of expertise that was being wasted till now. There are some good people still in the group and I hope they are finally getting a chance to be heard. I’m sorry if my departure has increased the load upon them. I wish them all the best in their efforts to make their mark on the study. It is always hard to be sure of the root of things and perhaps the previous shortcomings of the MEGA/PAG relationship were due to oversight and circumstance rather than intent. Perhaps it is not too late for things to change.
And yet….
I’ve been torn in writing this post because I want to support my friends that remain in the PAG in their efforts to make MEGA better. I’m sure they will give it all they have but the honest truth is I don’t share their optimism. If I did, I suppose, I wouldn’t have resigned from the PAG. If things have changed for the PAG, I suspect it has more to do with spin than substance. I have to judge the study from my own experience, not from a single upbeat blog post. I have to look at the Principal Investigator, her previous work, the gulf between the promises and my experience of the PAG, the feeling of being played along just enough to keep us in tow. I think patients and informed professionals are right to express continued concern about the study. I have feared all along that it is likely to hinder rather than help our understanding of ME because of the way the patients are chosen and I’m afraid I have seen nothing to change my mind.

Out of the Blue

Well, I seem to have gone into PEM at the moment – due to too much blogging amongst other things. Fortunately I have a post for ME Awareness Month which I prepared earlier. In it, I have tried to describe how it can feel to be suddenly stricken down with this devastating condition. Please take a few minutes to read it, especially if you know very little about ME. It is not an easy illness to understand unless you have it yourself or are close to someone who does – and even then it can be bewildering. I have tried to open a small window on the experience of trying to adjust to this unwelcome visitor. (And if you’ve been wondering what PEM is, you’re about to find out…)

One day you start feeling ill. You don’t think very much about it at first. It’s just a bug and bugs go away, don’t they? But at the end of a week you’re not feeling any better. You wonder how long this is going to take. You’re getting a bit alarmed.

At the end of a fortnight, you’re positively worried. You have to phone work yet again to tell them you’re still not well. There’s a growing pressure to explain yourself but you’re just as baffled as everyone else. Your body’s supposed to repair itself, so why’s it not happening?

You also have to explain yourself to your family. They want to know when you’ll be well again. There are things to do that you can’t put on hold forever. Could you give them some idea of when you’ll be up to speed again? This illness of yours is getting inconvenient.

So you go to the doctor, hoping that he will know, but he doesn’t seem to have any more idea than you do. He gives you a sick note but even that seems grudging. Even he seems to think you ought to be fixing yourself by now. But isn’t that his job?

You try to start doing more – but the more you do, the worse you feel. You’re weak and in pain and something feels poisoned inside you. You’re starting to think that something is seriously wrong. Continue reading “Out of the Blue”

Make Sure We Speak

After a difficult few weeks in the world of ME advocacy, it’s been really heartening to see the new critique of the PACE trial and accompanying editorial on the Sense About Science USA/ American Statistical Association website. After 7000 words of searing analysis, Rebecca Goldin concludes that the flaws in the study design “were enough to doom its results from the start”, while Trevor Butterworth’s editorial pronounces “a terminal prognosis” on the study. As far as patients are concerned, this demise cannot come too soon – and it remains to be seen if the British media, who have uncritically lauded the study on so many occasions, will consider this latest development to be worth reporting.

Nevertheless, it is encouraging for patients to receive such clear validation of what we have been saying for so long from such a reliable source. It has to be another important step in the right direction.

Trevor Butterworth writes: “David Tuller may not get a Pulitzer Prize for investigating PACE trial on a blog; but his service to—and we do not exaggerate—millions of sufferers around the world make it hard for us to think of another work of journalism so deserving of commendation.” Patients – including those who produced the initial critiques which first attracted Tuller to the issue – will heartily agree with that analysis, likewise with Butterworth’s acknowledgement of the important contribution of Julie Rehmeyer in drawing attention to the flaws of the trial. Let us hope their work pays off very soon and the study is deservedly retracted. Lead PACE investigator Peter White still has his finger in the dam but sweat is breaking out on his forehead. He must be wondering how much longer he can hold back the torrent of truth. Continue reading “Make Sure We Speak”

Medically Unexplained Assumptions

Jean Martin Charcot was a pathfinding 19th century neurologist with a particular genius for anatomical dissection and postmortem diagnosis, but he may be best known today for his work on ‘hysteria’. In his book Freud, Richard Webster describes Charcot’s ‘classic case of neurotic hysteria’, in which a man named Le Log—–  who suffered memory loss, paralysis and seizures after being knocked to the ground by a speeding carriage, was deemed by Charcot to be suffering psychological trauma from the accident. As Webster suggests in his book, such a patient today would be recognized as having ‘a case of closed head injury complicated by late epilepsy and raised intracranial pressure’. But the concept of internal head injuries was not understood at the time, so because Le Log—– had no visible signs of injury, Charcot assumed that the symptoms must be psychological. The poor man was misdiagnosed with ‘neurotic hysteria’ and subjected to psychological therapy,  which won’t have done very much to cure his concussion.

Charcot did not invent the concept of ‘hysteria’ but his interest popularized its use and over the years it was applied to epilepsy, multiple sclerosis, Parkinsons disease, cerebral tumours, and a great many other conditions which were not at the time recognized as the physical problems they were later acknowledged to be.

The diagnosis ‘hysteria’ is not in use today but the medical profession’s habit of labeling any patient with symptoms that don’t fit the pattern of a currently recognized pathology as ‘psychologically ill’ remains as prevalent as ever. These days, they use terms like ‘somatization’, ‘conversion disorder’, and ‘medically unexplained symptoms’ but the concept remains the same. Any set of symptoms which aren’t in the medical textbooks is assumed to be ‘all in the head’. Continue reading “Medically Unexplained Assumptions”

Message to Planet PACE

Prof James Coyne’s Freedom of Information request for data from the PACE Trial has been refused and he has shared the letter he received in explanation. It makes astonishing reading.

There have of course been numerous previous refusals concerning this data but the excuses given are increasingly desperate and unconvincing.

Prof Coyne was told: ‘The university considers that there is a lack of value or serious purpose to your request. The university also considers that there is improper motive behind the request. The university considers that this request has caused and could further cause harassment and distress to staff.’

The letter goes on to say: ‘The active campaign to discredit the project has caused distress to the university’s researchers who hold legitimate concerns that they will be subject to public criticism and reputational damage.’

The letter concludes: ‘The university considers that when applying a holistic approach, this request can properly be considered to be vexatious.’

Bearing in mind that James Coyne requested the data so that he could ‘verify the substantive claims of the article through reanalysis’, it is difficult to see why his request should be thought to ‘lack value or serious purpose’ or why it should be considered that he has ‘an improper motive’.

It is also hard to see why the PACE researchers’ apparent ‘distress’ and their fears of ‘public criticism and reputational damage’ can possibly be considered adequate justification for refusing access to their data. Continue reading “Message to Planet PACE”

Time to be Heard

Six weeks on from the infamously unhelpful article by Sarah Knapton in the Daily Telegraph, the online version of the newspaper has published an article on ME by Dr Charles Shepherd of the ME Association with a view to correcting some of the misinformation. This was part of a deal which was struck by way of redress for the Telegraph falling so short of the truth on this occasion, as part of which they also published a ‘clarification’ of their assertion that ME isn’t really a chronic illness. As the clarification stated that the study they had reported actually said no such thing, it might have been more appropriate to call it  a ‘correction’ but I suppose you can’t expect a leading national newspaper to have such a precise grasp of the English language.

As for Dr Shepherd’s article, it doesn’t appear in the print edition, this in marked contrast to Knapton’s article which was linked from the front page. We have elderly relatives who read the original article but will only receive Shepherd’s piece because we’ll print it out and send them it. Many other Telegraph readers will sadly remain in ignorance.

This sort of imbalance is pretty much standard, of course, in situations like this, and Dr Shepherd and the ME Association are to be congratulated for at least getting the deal they did. It is worth, too, saying a word or two extra in praise of Charles Shepherd, who has been performing duties like this on our behalf for the best part of three decades now, plodding time and again to the barricades to call out the truth into the no man’s land of ignorance, doubt and incomprehension, then plodding patiently back again in the knowledge that he will probably have to do the same thing all over again in an another week’s time. And another. And another. The man is a hero. We are very fortunate to have him.

We are also lucky to have ME patients such as Tom Kindlon who have been plugging away with well reasoned comments for years, slowly exposing the fracture lines in the PACE Trial and counteracting other misconceptions. Not all of us are capable of such exhaustive feats of analysis, and yet there is a growing understanding that we all have a part to play in getting the truth out there. Continue reading “Time to be Heard”