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Hillsborough Law – Shifting the Balance in Favour of Truth

The conversation on this You Tube ‘video’ took place on BBC Radio 4’s PM programme on 11th July 2017 when Andy Burnham, prompted by host Eddie Mair, proposed the adoption of a ‘Hillsborough law’ to shift the balance in the many instances where ordinary people bring genuine complaints but are dismissed and even denigrated by the establishment. He described the latter in terms of a cosy network of relationships between high ranking people in public bodies and the media. Burnham, a former Health Secretary and now Mayor of Greater Manchester, was speaking after the announcement of an inquiry into the massive blood contamination scandal which cost the lives of over 2400 people who received transfusions in the UK in the seventies till the nineties. He compared this to other scandals such as the Hillsborough disaster, in all of which the complaints of those involved and their families have been dismissed and ignored for decades.

I’m sure there are many other examples of such injustices. Hopefully the recent Grenfell Tower disaster will be dealt with more swiftly.

The conversation reminded me of an issue in which I am very much involved, that of ME (myalgic encephalomyelitis), also known – misleadingly- as CFS (chronic fatigue syndrome). This may seem like a trivial issue compared to the others I have mentioned, but therein lies the primary injustice. Unfortunately the term ‘chronic fatigue’ gives the impression of patients who are just ‘tired all the time’ so this is the view that many people have of this condition.

The truth is that the lives of people with ME are more severely impacted than those with a great many other illnesses including MS, HIV, and congestive heart failure. They suffer with a wide range of symptoms, far more than just fatigue. Even those who are ‘moderately affected’ are severely ill by any normal standards, while those termed ‘severely affected’ are often confined permanently to bed, in continuous pain, unable to sit up, tolerate light, or even communicate with their loved ones. To make matters worse, the sicker they become, the less medical attention they get. Doctors don’t understand the condition or know what to do, so they just stay away. Many people have died from ME, though this is rarely acknowledged by the authorities.

ME has been trivialised by the medical authorities for decades, notably by two British psychiatrists who studied an outbreak of the illness at the Royal Free Hospital in the fifties and concluded that it had been due to ‘hysteria’. The only ‘evidence’  they cited for this was that most of those affected had been female.

The misconception that ME is a mental health issue has persisted over the years, in part due to what has seemed to be the deliberate intention of those in authority. They have spread this confusion by adopting the trivialising name ‘chronic fatigue syndrome’ and also by using a wide range of mutually contradictory diagnostic definitions. Many of these are so vague that they include other, less serious, forms of chronic fatigue which therefore get lumped in together with ME. This has led to inappropriate ‘therapies’ such as GET (graded exercise therapy) and CBT (cognitive behavioural therapy) being recommended for ME. 

CBT can be a helpful therapy to assist patients to live with a wide range of physical conditions but its most common use in CFS/ME is very different. It is used to convince patients that there is nothing physically wrong with them and that all they need to do is to slowly increase their level of activity (using GET) and they will recover. This approach may be moderately successful for some forms of chronic fatigue (such as that due to depression) but it is likely to be extremely damaging for ME. It flies in the face of research evidence which has revealed substantial physical abnormalities and an abnormal response to exercise. It also runs contrary to numerous patient surveys which report that GET makes many ME patients considerably worse, sometimes permanently so.

It is interesting to note that the PACE Trial, a large scale UK study which purported to illustrate the efficacy of CBT and GET for ME, was part funded by the DWP (Department of Work and Pensions) who are of course responsible for the payment of sickness benefits but are not normally involved in funding medical research. This draws attention to the fact that the governmental authorities have a vested interest in ‘proving’ ME to be a minor condition which responds well to short courses of relatively inexpensive ‘treatments ‘ like CBT and GET – even though this approach contradicts research evidence.

The PACE Trial itself has been a subject of substantial controversy, concerned patients having discovered a great many irregularities, the most astonishing of which was the change of patient entry criteria after the trial was started, thereby allowing patients to be ill enough to enter the trial, deteriorate during it, yet still be classed as ‘recovered’ at the end. This has naturally resulted in an upward distortion of the success rate.

PACE, in common with other research into ME/CFS by related researchers, contains a great many such defects, any one of which could have resulted in failure in a high school practical exam. Concerns have prompted more than forty eminent doctors and researchers who work in the field of ME/CFS to write to The Lancet, the journal which published the original PACE paper, calling for an independent review of the study.

A substantial critique of PACE’s many defects has been produced by the investigative journalist and public health lecturer David Tuller, who has also produced critiques of other studies by related researchers. A list of links to these articles can be found here. Building on the initial work of concerned patients, Tuller demonstrates glaring errors in these studies, yet the researchers and the supposedly reputable journals which publish them have responded to such criticisms with dismissive, unconvincing replies or else no response all.

As Andy Burnham suggested on the radio, there is a cosy network of people in authority who close ranks to defend each other against the criticisms of ordinary people. He mentioned politicians and the media but unfortunately – though it might damage the career of a politician like Burnham to suggest it – this is equally true of the medical profession. The PACE researchers seem to believe so strongly in their own preconceptions that they see nothing wrong in they or their colleagues ‘tweaking’ their studies to get the result that they believe to be the right one, and their friends in high places have such confidence in the integrity of their clubbable friends that they defend them without question, not feeling there is any requirement to take a look at the actual facts of the matter.

Part of their strategy – again as Burnham suggested – is to denigrate those who try to hold them to account.  Patients had to fight hard to get vital data from PACE released under the Freedom of Information Act and met with vilification from the researchers for trying to do so. They were accused of making ‘vexatious’ requests for information, of ‘harassing’ the researchers, and even – in their attempts to unravel the complex sleights of hand that had been employed to get the researchers the results they wanted – of having ‘obsessive attention to detail’. At the FoA Tribunal which eventually ruled that the data should be released, patients were accused of presenting ‘a serious risk of violence to trial participants and researchers’ but this was deemed by the tribunal to be ‘grossly exaggerated’ and the ruling noted that the only evidence presented of such ‘violence’ was of one of the PACE researchers being heckled at a lecture.

Patients feel intense frustration that in spite of all the work done to expose the shortcomings of PACE and associated studies, they have not been retracted, and GET and CBT remain the recommended ‘therapies’ for ME/CFS in the U.K. Furthermore one of the PACE researchers’ associates – herself the source of numerous flawed and misleading papers on the condition – is now giving lectures in which she routinely vilifies the patients who question her research and accuses them of being ‘anti-science’. In view of the quality of the research in question, this is beyond irony.

Sadly, the cosy network even extends as far as some of the organisations which supposedly exist to further the interests of patients. The two main national organisations belong to a research committee whose Vice Chair gives the lectures mentioned in the previous paragraph and who seems to believe that severe ME in children is really ‘pervasive refusal syndrome’, a mental health condition for which no evidence exists. The use of this alternative diagnosis can lead to children being taken away from their parents and forcibly given a course of GET, even though this is not recommended for the severely affected and can result in severe disablement.

One of the patient organisations, Action for ME, has supported and enabled the PACE Trial itself, supposedly being involved to support the interests of patients yet singularly and spectacularly failing to do so. Increasingly, the patients whose financial contributions enable these organisations to exist are complaining about their actions and the company they keep – but sadly the cosy network described above seems to extend to their trustees and celebrity patrons, who themselves prefer to support those in authority rather than patients.

So yes, in the case of ME, we patients feel that the odds are stacked against us. A Hillsborough law would indeed be useful. As things stand, we ordinary patients seem to have very little power against the network of those with vested interests who believe that they and their friends must be right because of who they are. We have the truth on our side and we have the evidence to prove it – but that does not appear to be enough.

A quick PS: The national patient organisation I didn’t mention by name above is the ME Association. I would like to make plain that I have a great deal of respect for their work and that of their Medical Advisor Dr Charles Shepherd, who much of the time do a very good job of representing our interests. An example of this work is their recent petition to NICE regarding the decision not update the guidelines on ME/CFS (do consider signing if you haven’t already – this is important). However, MEA’s decision to stay in the CMRC and continue to work with those who malign patients and whose research contributes further misinformation about ME seems to me – and to many other patients – to be a serious error of judgement. They really should listen to the voice of informed patients.

PPS Sorry my first YouTube video isn’t exactly a multimedia extravaganza. It’s been a steep learning curve. Many thanks to Nigel B for helping me get as far as this.

Continue reading “Hillsborough Law – Shifting the Balance in Favour of Truth”

Author SpoonseekerPosted on July 18, 2017August 10, 2017Categories ME/CFS, PACETags Action for ME, Andy Burnham, BBC, CBT, cfs, Freedom of Information, GET, Hillsborough Law, ME Association, mecfs, NICE, PACE8 Comments on Hillsborough Law – Shifting the Balance in Favour of Truth

Some Response from MEGA

Following yesterday’s emails to Prof Holgate, Chair of the CMRC, and Sonya Chowdhury of Action for ME, Leeds ME Network has received short responses from both of them including a bit of encouraging news.

Prof Holgate said: “The preparation of the initial outline for this grant is very much ongoing. I am sure the applicants will be as inclusive as possible, and I am already aware of a discussion of how to include very severe house-bound patients. Finance will be a limiting factor.” He says he will pass the email on to those involved in preparing the grant outline.

Sonya Chowdhury said she would leave it to Prof Holgate to respond on behalf of MEGA but was able to confirm the following:“There has never been any suggestion that individuals for the patient advisory group will be Action for ME recruited; indeed I believe I have tweeted to this effect. We completely expect the group to be representative and recruited transparently.”

So, two pieces of encouraging news: about the housebound patients and the recruitment of the patient advisory group. I’m a bit concerned, though, about yet another mention of the limitations of finance when the severely affected are mentioned. This is a massive study with 12,000 patients seeking finance in excess of £5m. Surely with so much invested, we can make sure that the severely affected are adequately represented…

Author SpoonseekerPosted on October 15, 2016October 15, 2016Categories ME/CFSTags Action for ME, cfs, CMRC, Leeds ME Network, mecfs, MEGA, severely affected, Sonya Chowdhury, Stephen Holgate12 Comments on Some Response from 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”

Author SpoonseekerPosted on October 14, 2016November 2, 2016Categories ME/CFS, PACETags Action for ME, Canadian Criteria, CBT, cfs, Esther Crawley, GET, Julia Newton, Leeds ME Network, mecfs, MEGA, NHS, NICE, Peter White, severely affected, Sonya Chowdhury, Stephen Holgate6 Comments on Making the Most of MEGA

A Broader Picture

The last draft post I wrote about the MEGA petition was superseded by events before I finished it, so I’ll try and crack on with this one before the same thing happens again. Of course ‘cracking on’ in ME terms is still kind of slow but I’ll see if I can break the tortoise barrier.

So, what’s happened recently?

Well, we’ve been told that Peter White is retiring from research and will only be an ‘advisor’ to MEGA from now on. This perspective appears to be endorsed by the latest list of MEGA personnel, which no longer includes him. I can only give a muted ‘hurrah’ to this one. Advice is dangerous stuff and you can still do a lot of damage with it. His PACE Trial is swiftly becoming a watchword for bad science (see here, here, and here). Is he really the sort of ME ‘expert’ that either we patients or the MEGA team want around to guide this latest project?

It really is astonishing that MEGA apparently do still want him around after all he has done, and that they clearly expect patients to put up with it. It seems to me that if a passing Martian was given a brief course in English and the full facts, then even he (or she) would swiftly understand why we don’t want Prof White anywhere near this project. Why do the MEGA team not get this?

People with ME have  been left on the scrapheap for decades. I myself have been ill for over thirty years. That’s over half my life. I have no children because of it. I lost my job. My life is very limited. Yet I am one of the relatively lucky ones. I can sit and tap at this keyboard – as long as I take plenty of rests to fend off the shoulder and eye pain and overall exhaustion. There are plenty of others who have to spend all their lives in bed, who can’t stand the light, who can’t even talk to their loved ones. We’ve all heard about Whitney Defoe whose birthday it recently was. He is not alone in his suffering. The vast majority of the severely ill are left to fend for themselves as best they can. Rarely do doctors come near them and they wouldn’t know what to do if they did.

And all this time, all these decades, so little research has been done, in large part because of the fairy story dreamed up by the PACE researchers and their associates: the fairy story that Continue reading “A Broader Picture”

Author SpoonseekerPosted on October 7, 2016October 14, 2016Categories Advocacy, ME/CFS, PACETags Action for ME, CBT, cfs, Charles Shepherd, children, CMRC, diagnosis, Esther Crawley, GET, Jane Colby, Julia Newton, ME Association, ME Research UK, mecfs, MEGA, NHS, NICE, PACE, Peter White, severely affected, Stepehn Holgate, Victoria Strassheim8 Comments on A Broader Picture

MEGA Petition

Here is a copy of an email from Leeds ME Network sent to Sonya Chowdhury, CEO of Action for ME concerning the petition which she has been circulating regarding the proposed ‘big data’ study by the UK CFS/M.E. Research Collaborative. It is another situation, similar to the NIH study in the US – where the research sounds very promising but some of the personnel involved sound alarm bells. Leeds ME Network are therefore requesting more details and – hopefully – reassurances.

Dear Sonya – I am writing because I find it difficult to know how to respond to the MEGA petition which you have been promoting. Of course I am in favour of more biomedical research into ME. Normally I would sign this petition, circulate it to our members, and publicise it more widely on social media. Yet I am concerned about the presence of  Profs White and Crawley in the MEGA team. I am sure you are aware that many other patients share my reservations.

Following the recent release of data, it is now clear that Prof White and his PACE team deliberately manipulated the data to get the result they wanted, thereby deceiving patients, doctors, and decision makers both in this country and worldwide, Action for ME included. I know that your predecessor, Sir Peter Spencer, expressed surprise at the results of the PACE Trial. Well he might have done, because it is now clear that the published results were a travesty of the truth.

As for Prof Crawley, as you will be aware she is now about to test GET on children in the MAGENTA trial (in spite of widespread concerns about the PACE trial plus substantial reporting by patients of harms from this therapy), has recently been testing the quack therapy the Lightning Process on children, and has added to the substantial body of misinformation about ME by conducting a study of the prevalence of CFS at age 16 by using subjects who were ‘diagnosed’ by questionnaire and without the involvement of doctors.

In view of these issues. I’m afraid I have no confidence in any research involving either Profs White or Crawley and am therefore loath to sign or distribute the petition. But on the other hand, I would very much like to support biomedical research. I therefore feel I am caught between a rock and a hard place and it seems that many other patients feel the same.

I notice that ME Research UK have put a slightly different list on their web site: a ‘main MEGA team’ which does not include Profs White and Crawley. This makes perfect sense, as it is hard to see why either of them, given their skill sets and the nature of their previous work, should be involved in biomedical research anyway. So I wonder if their presence on the petition page is a token one only, acknowledging their membership of the Research Collaborative perhaps? If this were the case, if Profs White and Crawley were not actually to be involved in the big data project (and therefore not at liberty to subvert it), I might well feel able to support and publicise the petition. I wonder if you are able to advise me on this or else pass this email on to someone else who can?

I have just being listening to your presentation at the Research Collaborative conference in which you spoke very tellingly of the need for an appropriate level of funding for ME research. I am grateful to you for making this case and am sorry if you feel that I – and perhaps others – are ‘shooting ourselves in the foot’ by expressing such reservations about who is in charge of research. But experience has taught us that bad research is even worse than no research. The efforts of Prof White and the biopsychosocial school have been one of the main factors in reducing investment in biomedical research in recent years. It has taken patients many years – and a lot of energy we could ill afford to spend – to get to the stage where we are finally starting to expose the PACE Trial for the sham that it is. We cannot afford for the same thing to happen again.

 Note: I’ve been asked to include details of ‘unsigning’ in case you previously signed the MEGA petition and wish to un-sign pending further information about the study. I covered it here

Author SpoonseekerPosted on September 29, 2016October 2, 2016Categories Advocacy, ME/CFS, PACETags Action for ME, cfs, Esther Crawley, GET, ME Research UK, mecfs, MEGA, NIH, PACE, Peter White, Sonya Chowdhury12 Comments on MEGA Petition

Action for ME and the PACE Trial

Action for ME has now joined the ME Association in asking for the release of data from the PACE Trial. This is a very encouraging development. Well done to all who wrote in – and to Clark Ellis whose blog encouraged us to do so.

Action for ME have supported PACE in the past and let down their members and ME patients in general very badly in the process, but they are now under largely new leadership, with a new CEO and new Medical Advisors. The contributions of CEO Sonya Chowdhury in the media have been noticably more robust in recent months and her profile page on their web site speaks of ‘a bold and ambitious agenda for change’.

There are those who will not forgive Action for ME for their past mistakes but, like it or not,  they are frequently called upon for comment by the media and it seems to me that it is in the interests of people with ME to have an Action for ME that is on our side, which is stridently putting our case with our support, rather than one we perceive to be our enemy.

According to the Feb 12th statement by the AfME Board of Trustees, “The Board is continuing to consider Action for M.E.’s position on the PACE trial and related issues more widely, and will make a further statement in due course”. So it seems to me that this is a good time for ME patients to let them know what we would like this position to be. I have just sent them a message to this effect which I have pasted in below.

Please consider contacting Action for ME yourself, especially if you are a member. Feel free to reproduce my message, in part or in full, though if you have the spoons available to write in your own words, then so much the better. I don’t think the message has to be long or complicated: perhaps the shorter and more to the point it is the better. Not everyone is as long-winded as I am! I strongly suggest that you keep it polite and supportive though, however annoyed you maybe with AfME’s previous actions. Anger can get in the way of the message. The truth is powerful enough by itself.

My message follows:

Dear Ms Chowdhury – I am writing to thank you and Action for ME for joining your voice to those who are asking for the release of the PACE Trial data. Continue reading “Action for ME and the PACE Trial”

Author SpoonseekerPosted on February 14, 2016February 26, 2016Categories Advocacy, ME/CFS, PACETags Action for ME, CBT, cfs, David Tuller, GET, ME Association, mecfs, PACE9 Comments on Action for ME and the PACE Trial

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