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
spoonseekerdotcom 
This new research is cause for concern. Sufferers are asking for more details on the Action for M.E Facebook page but not getting answers as important things such as the M.E criteria used for participants is undecided on. So people are being asked to sign something that nobody knows exactly what it is. I’m very wary of this.
LikeLiked by 3 people
The gloves are off!
Well done. (y)
LikeLiked by 1 person
I’m pleased that people are asking on AfME’s own Facebook page. That will make it harder for them to go on dodging the questions. Yes, the criteria are very important of course. I heard Prof Newton talking at the ME Collaborative conference yesterday about how they had found no HPA axis irregularities – in contrast to previous studies. She attributed this to having effectively screened out patients with depression (ie using more stringent criteria). It is becoming more and more obvious that more attention must be paid to criteria if we are to get meaningful results. Patients have been saying it for years of course, but too many researchers have been what can only be described as ‘cavalier’ with their choice of criteria.
LikeLiked by 2 people
So then Julia Newton being involved is a good reason to worry less about how MEGA will proceed
LikeLike
No one is saying there aren’t good people – such as Julia Newton – involved in MEGA but I think we should still be concerned about the presence of Peter White and Esther Crawley. White’s Guardian article yesterday made clear as never before that he will come up with any old lies to try to promote his mistaken view of ME/CFS. He simply cannot be trusted and I think we patients have to do whatever we can to get him removed from MEGA. We cannot afford to have yet more misleading research about the condition.
LikeLike
Reblogged this on MAL's MURMURINGS.
LikeLiked by 1 person
Some who read the title ‘biomedical research’ signed but since seeing the issues, no longer wish they’d signed. There’s no way to retract support. The title is misleading and clearly designed to deceive to get as many signatures as possible. How can anyone now trust any of the people behind such a misleading claim?
LikeLike
Yes, it’s annoying there’s no way to retract support. My wife fell into that trap. Look, this may well be a very good biomedical research proposal – it’s just that some of the people involved ring alarm bells. What flabbergasts me is that our objections to such people – and our concerns about the criteria to be used – seem to be greeted with surprise. They just don’t seem to understand that they’re dealing with patients who’ve been messed around too many times and aren’t going to put up with it any more. They need to do better than this. Nothing we are saying is unreasonable, but if they want our support, they have to treat us as partners who have a voice about what is done in our supposed best interests.
LikeLike
I have spotted this on Facebook on how to withdraw a signature. I haven’t tried it so can’t guarantee it works but could be worth a try.
“If people have signed this Mega Research Project Petition …unaware of the PACE exponents’ involvement …if they wish to UNSIGN pending further clarification of patient selection criteria, data sharing protocols, and exactly how the PACE experts are involved in the study…..
Go to your confirmation e.mail and press the “didn’t sign” text box and that will remove your name.
If you have lost or deleted the original email confirmation, you can also fill in a form on the Change org web page and request to be removed. They will do so and confirm it.”
LikeLiked by 3 people
I’m completely exhausted and in bed post MillionsMissing but I have a similar email to Sonya percolating in my mind I can’t switch off. I wonder what her inbox is like today? !
My potential email also raises concerns about the impact on sampling. If Peter White really is involved there will be a large section of the community who won’t take part, either out of principle or due to genuine concern about how their data will be mis/used. Some people may still be oblivious and take part but they won’t be a representative sample. There will be key differences between people who know about the PACE debacle and those who don’t. They will likely be people who haven’t been ill as long (and we know that may be important biomedically). Perhaps the ones who have particular difficulty reading so don’t read the PACE expose articles which have been everywhere this week. Perhaps those with mild ME who put all their spoons into working, and don’t follow these debates. Other people have raised concerns that a couple of these researchers have a definition of the condition that most of us don’t accept. Which researcher’s definition will be used?
Why do they have a petition? If you are the researchers wanting to do research you apply for funding you don’t start a petition! You have a petition when you are not the people with the power to make a change (eg http://www.stopGET.org).
It is very frustrating and unnecessary.MEGA could be decent research. I was excited when I first heard about it. Why are these researchers involved? They are not biomedical researchers. Collaboration as a value appears to be placed above the credibility of the research.
LikeLiked by 1 person
You make some very good points about the impact on sampling, Jenny. As for the petition, I know there’s increasing pressure on researchers to show that they have consulted with patients when they try to get funding for a study, so maybe the petition is to give the impression that this has happened. Which of course it hasn’t, but they may now realise it has to (to judge from one or two tweets of Sonya’s today which suggest she is taking notice of all the dissent.) Though Leeds ME Network haven’t heard back from her yet.
Since you wrote, the article by Peter White on the Guardian site has appeared. In my opinion he has thoroughly disgraced himself with this, deliberately misrepresenting the work that Tom Kindlon and the others did on re-analysing the data. He clearly knows very well what the truth is, and is blatantly attempting to deceive the Guardian readers. It is clearly unprofessional and his MEGA colleagues ought to realise they need to disown him for the sake of credibility. We now have a stronger argument than ever for insisting he comes nowhere near MEGA.
LikeLiked by 2 people