More on MEGA

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

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

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

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

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

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

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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The last draft post I wrote about the MEGA petition was superseded by events before I finished it, so I’ll try and crack on with this one before the same thing happens again.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”

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

#MillionsMissing

Who and what are the #MillionsMissing because of ME?

There are Millions Missing from employment

Millions Missing from relationships

Millions Missing from parenthood

Millions Missing from friends & relatives

Millions Missing from activities they love

Millions Missing from the world beyond a bedroom

Millions Missing from the world beyond a house

Millions Missing from the lives they should be leading because of ME

 

There are Millions of health professionals Missing knowledge of ME

There are Millions Missing from biomedical research funding for ME

Millions of patients are Missing correct diagnosis of ME

Millions of patients are Missing effective treatment for ME

Millions of patients are Missing any kind of medical attention

How many Millions more must be Missing before there is understanding?

How many Millions more must be Missing before there is treatment?

How many Millions more lives must be lost in waiting for there to be progress in fighting ME?

 

ME (myalgic encephalomyelitis – also known by the rather misleading name of chronic fatigue syndrome) is classified by the World Health Organisation as a neurological condition. The 2015 US Institute of Medicine Report concluded that it is ‘serious, complex, chronic, systemic disease’.

 

Some places to find out more about ME:

ME Association – patient support (UK)

Tymes Trust – support for young patients with ME (UK)

ME Research UK – biomedical research

#MEAction Net – has info on today’s #MillionsMissing demonstrations worldwide

You can also search for #MillionsMissing on Twitter

 

Thank you for reading