Many patients and carers left additional comments for Professor Holgate of MEGA when they signed our recent letter. I wasn’t able to carry these over when I transferred the post to its permanent home, so I’m reprinting some of them here. Sorry I haven’t included them all but I am grateful for all your comments and signatures nevertheless. I shall link to this post when I send the follow-up letter to Prof Holgate (which I hope till be tomorrow). I will post the follow-up letter here on the blog as well.
Here are the comments:
Graham McPhee:
spoonseekerdotcom 
I find it puzzling that you feel that researchers will be put off looking into ME/CFS because many patients are desperately complaining about the poor quality of the kind of research that is currently funded, and the failure of others in the research world to recognize that. Good researchers will expect high standards. Over the past 30 or more years, researchers in this country have seen that shoddy psychosocial research is praised and continues to be funded, but all proposals for biomedical research (apart from the special one-off situation in 2012) have been rejected. Why would a good researcher want to be linked to that? The charities do not seem to have problems in finding researchers. People like Lipkin, Tuller, Davis, Rehmeyer are stunned to receive so many emails and messages from patients grateful that they are insisting on proper standards. I worry about what sort of closed environment you are working in that prevents you from seeing that. Perhaps it is time you met up with some patients who have been trying to bring these facts into the open, so that you can discover just how much harm is done to our lives by the failure of those in authority to insist upon scientific integrity.
Eilidh Hewitt:
The most astonishing statement I have heard recently is that Stephen Holgate doesn’t know why the ME community are opposing MEGA. Where has he been all these years! Perhaps he should start by reading the comments on the OMEGA petition or even a lot of the negative comments on their own MEGA petition.
Why are we opposing MEGA, I can sum it all up in one word ‘TRUST’ or more precisely the lack of it.
The main question is, why would we trust Esther to take a very important role in this research or any members of the BPS school? The problem is knowing where to start with the reasons why she shouldn’t be involved.
I could go on but perhaps that is enough to convey the picture.
tanteros:
It is unusual I expect for patients to question the expertise of researchers but sadly there has been a long history of research into ‘generalised chronic fatigue’ being show cased as research into ‘ME’. Treatments which show a moderate benefit to a minority of those who experience chronic fatigue are hailed as effective treatments for ME. In my view this is equivalent to researching common headache and generalising the results to migraine. This kind of sloppy approach to research does not engender much faith that researchers are helping people with ME. I would dearly like the MEGA project to take off but diagnostic criteria and sample selection are critical. I have no faith that Esther Crawley, who plays a leading role in the research collaborative, has ever taken this on board. I think the Collaborative needs to address why there is so much mistrust between patients and researchers. It is not ‘bizarre’. There are very good reasons given that researchers have so let down this particular patient group over decades and I for one would like us to set off on a road where patients are being listened to as we do have valuable input to make.
Tanya Marlow:
I’m signing because I am one of the 25%. This is an opportunity – unlike many other studies – to study the most severely affected. It is a wasted opportunity not to include the most severely affected and make us a priority. If you’re not studying the most severely affected, you’re not studying the whole disease. The loose definition will send us back into the realm of PACE – not knowing exactly what we are studying.
I am also signing because I do not hold any trust in Esther Crawley. Her endorsement of the PACE trial casts a large question mark for many ME patients over her scientific credibility for such an important study. The patient community cannot afford another PACE debacle.
If this is to fly, then the patient community will need to support it. As it stands, reluctant though I am to prevent what could be hugely significant study, I cannot support it as it stands. Changes need to be made before funding is secured, not after.
Sarah Bellany:
As someone who has severe ME and is experiencing benefits from a heartrate based exercise/activity limiting program – I feel intense frustration and sadness when I read about exercise/cbt trials being done on vulnerable patients without any objective measures of health. I feel funds should be diverted to studies that try to understand how to measure the level of disability objectively in a way that’s appropriate for the disease and that reflect the delayed increase in symptoms after exercise.
Only then we can build safe illness management programs.
I’d recommend the workwell institute in the USA for learning about objective CPET 2day machine/exercise testing on moderate me/cfs patients. When patients improve, so do their results on the 2day CPET test.
CBT, would then become a secondary supporting therapy to help reduce stress and to help patients find the motivation and will power to stick to staying within their heartrate activity limits.
It’s very depressing and heart wrenching to think of the effect MEGA will have on sick people in the community. The MEGA studies seem designed to reinforce and repeat the errors of previous faulty studies rather than achieve scientifically sound results.
Nasim Marie Jafry:
I have had RamsayME since I was 19 years old, diagnosed by consultant neurologist in 1983. I am now 52. I prefer biomedical research that is going to absolutely target classic ME: the ongoing conflation with fatigue is not helping me or other ME sufferers a jot.
Joan Byrne:
Prof Holgate’s assertions about lack of understanding of why patients would set up an alternative petition is typical of the way these people operate. Just ignore what people are saying and plough on with their own theories regardless of who they harm
It’s always a good idea to directly challenge such ridiculous assertions and put as much information as possible out in the public domain so there can be no excuse for these people to pretend they didn’t see or hear what patients are loudly saying. Prof Holgate clearly needs a ‘join the dots’ lesson from people with ME.
So therefore I think there is great merit in letting him know that no amount of tinkering around with MEGA at this stage will make it acceptable. This thing is rotten to core. To use an analogy – you can polish up the outside of an apple as much as you want, but if the core is rotten it will just eat it’s way through. ”
So long as PACE and its pawns are still underpinning treatment for PWME, patients continue to be daily abused, disrespected, disbelieved, refused social, economic and medical support and basically tossed aside to fend for themselves. The ME community will therefore not condone any new research unless these issues are dealt with fully and completely first. PACE must come off the table and apologies issued. If that happened it would IMMEDIATELY make the situation far better for people with M.E. and, after that, honest research can follow from that position.
In addition I think it’s important that we do not allow them to continue their blatant duplicitous speak that Prof Holgate and others on MEGA and the CMRC are guilty of, i.e. speaking from both sides of their mouths. (Reference his talk of biological research on one hand with his recent media comment on the other hand that we needed more quality research like FITNET. Also reference Esther Crawley saying recently that ME is biological but can be fixed with psychological interventions). Its clear that their language is becoming more and more sprinkled with biological words and if they think they can just slink over to the biological side while refusing to acknowledged their part in condemning people with M.E. to decades of neglect, they can think again.
We are way past being polite at this stage. Enough is enough. People are dying or suffering a living death.
Rob Wijbenga:
MEGA isn’t about ME but about fatigue. This is completely misleading and a step of 30 years back into medieval ME. If the BPS-model would have made way for solid biomedical research some 20-30 years ago, most probably my wife wouldn’t have suffered and died from it.
Steve Hawkins:
There are many researchers across the World who are very interested in this illness, and the international exposure of the shortcomings of the PACE trial and those involved with it, has done a great deal to *increase*–not decrease–that interest.
As a patient personal researcher of over 30y experience, I would like to add these additional concerns:
It shows a worrying lack of judgement on Ms Crawley’s part, that she seems to have been taken in by snake oil merchants of the ‘Lightning Process’, despite the ASA rulings. I also find it galling that she is permitted to call herself an expert, when there are patients like us, who have been studying this illness and the research around it, for almost as long as she has been alive, and for whom, it is glaringly obvious that she is holding on to an easily falsified belief.
(I mean, easily falsified to the individual expert patient, who knows his/her own body, and knows from careful personal testing, that they do not harbour false beliefs: the fact that third parties may choose not to believe us, does not alter the evidence of decades of personal trial and error. We have a perfect advantage and perspective on this: outsiders like Dr Crawley only have beliefs to go on. Many of us patients were scientists in our other lives, and, when we say we *know* Crawley’s hypothesis is wrong, we do really know for certain. For the patient it is a very easy thing to prove: Prof. Holgate really does need to appreciate this fundamental point.)
The point of trust could also be expanded upon:
Prof. Edwards notes that, as Prof. Holgate says: the MEGA petition was started before CMRC had even assembled a team or a protocol. This is not just evidence of jumping the gun by CMRC, but evidence of more controlling PR tactics by Fiona Fox and SMC.
SMC evolved from a long sequence of libertarian agitprop groups, and is carrying the same libertarian, business, crusade into the science world. Its tactics are to spin results, and steer research applications, towards those areas that it thinks will be most beneficial to its business promoting agenda. These people are taking ownership of, and steering, the MEGA project right from the start–as is demonstrated by the premature MEGA petition itself–and they WILL spin it, and its results, just like they spun PACE, and, no doubt, organised Crawley’s latest blunder into the media.
In order for the patients to have any confidence in anything that comes out of CMRC, Prof. Holgate, and his serious science colleagues, MUST, divorce themselves from SMC, and all the tainted ‘researchers’ it has used to spread the same old ‘ME is all in the mind, of troublesome protesters’ meme. SMC clearly treats ‘ME protesters’ EXACTLY as it treats animal rights, and GM, and, previously, climate change, protesters. Fox and friends really do firmly believe that all these people are just spreading dangerously anti-libertarian ideas and must be stopped.
Not only was the MEGA petition an attempt to spin a project before there was even a protocol–a process akin to pressing the MRC into writing a blank cheque–but, also, it sought to bias the debate, by not allowing anyone to comment, unless they first signed the petition! It has SMC dirty tricks written all over it. OMEGA *had* to be set up: SMC forced it to be set up, by trying to control the MEGA petition outcome by preventing perceived ‘negative’ comment.
http://powerbase.info/index.php/Science_Media_Centre
How could anybody trust any project that the SMC had a hand in after this, when very similar tactics were used to spin the PACE trial–presumably also advised by SMC, which may even have been set up by Simon Wessely, Mansel Aylward, and friends specifically for that purpose? (Given their long sequence of letters seeking to cut out the patient groups and get control of the public narrative around M.E.,obtained under FOI request by Valerie Eliot Smith.
https://valerieeliotsmith.com/2015/01/20/the-secret-files-unwrapped-part-i-the-importance-of-fair-and-accurate-records/ )
It really is this bad for UK science, that it has a fifth column of reactionaries at its core who are out to impose their own vision of a ‘libertarian science’ future by controlling what the media reports. They are very experienced PR manipulators and propagandists, but they will, eventually, get found out, and no creditable scientist should have anything to do with them in the meantime.
I do hope that Prof. Holgate will, on reading these earnest comments, have a much better understanding of why patients, who have both followed and suffered the history of M.E and its detractors, cannot have anything to do with any projects in which the SMC and its preferred coterie of libertarian-approved ‘scientists’ has a hand. I do hope that, as a bench scientist, he is just naïve on the politics of the subject: then somebody should be making him aware of the dangers. It has nothing to do with IiME, and everything to do with the company he keeps.