Petition: Opposing MEGA

[Hutan]

what will happen to a group of high quality scientists (who have nothing to do with a psychiatric model of causation) if you tell them that people with ME/CFS do not want to make use of their willingness to enter a very controversial area of medicine

Who exactly is telling them that people with ME/CFS do not want them to do research on ME? Very few people here.

The high quality scientists are welcome. But leadership of these scientists by people who have shown that they are very poor, very biased scientists is not.

 

[charles shepherd]

Dear Charles,
I agree with others here that it is a misrepresentation to suggest that the response to the MEGA petition with a counter petition is an attempt to stop the project in its tracks. That is not what is said or intended as I understand it. I think the original petition was disingenuous and a response is entirely fair.

With regard to the question about the Biobank material. Whether this is included will be a matter of practicality but I would hope it would be, since that was the whole point of collecting it. My own calculations indicate that a cohort of about 1,000 ME cases would be appropriate, based on previous genomic publications and the Biobank goes quite a way to that. What I think is more important is that any study of the sort planned by MEGA should have as high quality patient selection and documentation as the Biobank. Large scale studies of this sort can be completely useless if cohorts are not properly selected. The subjects and controls have to be matched for race in some detail, and also need to reflect true demographics. CFS clinic lists are unlikely to be much help to us.

My own real concern here is that the team shouldn't include those who have demonstrated that they do not understand basic research methodology. I will not name names but anyone who still supports the PACE study after all that we now know from patients' analyses will fall into that category. I have no preconceptions about any hypothesis being better than another (although I do like hypotheses to be coherent!) but individuals who have shown themselves not to understand scientific method should not be allowed to prevail for political reasons.

Hi Jonathan

Thanks for these very helpful and constructive comments about patient selection and the use of the ME Biobank samples

For the record, I have already stated that as Peter White has retired/resigned from the MEGA planning group (and the Board of the CMRC) he should now terminate all involvement with the MEGA study

And as we have been endlessly discussing, the protocol is still being discussed and developed - so I am keen to hear what people with expertise in this area of research have to say about the way in which this MEGA proposal should now be developed - because I support the aims of the study

My personal view is that it would be very helpful if you would be willing to submit a more detailed analysis of how you feel the patient selection process for a 'big data' -omics study should be carried out

Regarding the petitions - reading all the comments on PR it's difficult to find anyone who wants to see the MEGA study proceed, even if changes to the personnel were made. I don't sense any real enthusiasm on PR for a big data -omics study!

Charles

 

[BurnA]

Regarding the petitions - reading all the comments on PR it's difficult to find anyone who wants to see the MEGA study proceed, even if changes to the personnel were made. I don't sense any real enthusiasm on PR for a big data -omics study!

Have you looked ?

 

[Wildcat]

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The hypothetical "changes to personnel" that Charles refers to (which the majority of patients expressing their views want) does include the Vice Chair of the CMRC, who is one of the two researchers whom patients (within and outside of PR) are totally understandably seriously concerned about being involved in MEGA in any way whatsoever.


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[charles shepherd]

Who exactly is telling them that people with ME/CFS do not want them to do research on ME? Very few people here.

The high quality scientists are welcome. But leadership of these scientists by people who have shown that they are very poor, very biased scientists is not.

I take your point

But out in the real world we have a situation where Professor Stephen Holgate (who is a really decent doc who genuinely wants to help people with ME/CFS) has undoubtedly spent a great deal of time and effort bringing together a group of top research scientists in various branches of -omics etc, organised meetings and a workshop etc,and formed a MEGA planning group - where they will discuss and develop a protocol, and will (in theory) then spend further time preparing a research grant application

If Stephen then goes back to these researchers and says -

Sorry, this has all been a complete waste of time over the past year

The ME patient community does not like the MEGA study because it involves Dr X, or the protocol you have developed is not going to work, then I think it's highly likely that they will quickly depart for other diseases and be very reluctant to take any further interest in getting involved with an ME/CFS research study

 

[charles shepherd]

Have you looked ?

Yes - I've read most of the posts on this thread on PR

There are a few from people who would like the MEGA study to proceed (provided appropriate changes are mae) but there aren't very many!

 

[charles shepherd]

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The hypothetical "changes to personnel" that Charles refers to (which the majority of patients expressing their views want) does include the Vice Chair of the CMRC, who is one of the two researchers whom patients (within and outside of PR) are totally understandably seriously concerned about being involved in MEGA in any way whatsoever.


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Yes - I am aware of the people being objected to

As I have already stated, decisions on membership of the MEGA planning group is made by the MEGA planning group

I support the AIMS of this -omics biomarker study but I am NOT a member of the MEGA planning group

 

[Esther12]

The points about Peter White, Esther Crawley, PACE trial etc are well known and being preached to the converted

Are they well known by people like Holgate, or the other MEGA researchers? I get the impression that a lot of people in UK medical research just go with the prejudices being promoted about patients.

Regarding the petitions - reading all the comments on PR it's difficult to find anyone who wants to see the MEGA study proceed, even if changes to the personnel were made. I don't sense any real enthusiasm on PR for a big data -omics study!

I think you've really misread people's concerns. A lack of enthusiasm for a a big data -omics study involving Crawley and White is not the same as no enthusiasm for a project like MEGA is those people were not involved.

Given how Crawley has behaved it's perfectly reasonable for patients to not want her to be given any further research funding. Asking patients to sign a petition supporting her work when so many of the problems she has caused have been left unaddressed was unfair, and seemed part of the ongoing attempt to sweep under the rug legitimate patient concerns about how the UK medical research Establishment has responded to ME/CFS.

 

[Wildcat]

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@charles shepherd .... I know you are answering lots of questions here .... but who is on the MEGA Planning Group?

Its pretty difficult to locate the makeup of the various CMRC panels as there is not a dedicated CMRC website ... everything being mediated via AFME, who are not always fully forthcoming with all the details we would like to see.
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[Esther12]

Yes - I've read most of the posts on this thread on PR

There are a few from people who would like the MEGA study to proceed (provided appropriate changes are mae) but there aren't very many!

Just to be clear - if White and Crawley were removed, I think I'd like MEGA to go ahead (although I'd still like more details before deciding).

 

[eafw]

I don't sense any real enthusiasm on PR for a big data -omics study!

Oh, that's really unfair. I think the majority are/would be very enthusiatic about a big data-omics study.

The stumbling block is the BPS influence, and that is where the community is split - 1) whether to go ahead in something of a compromise postion, hope for modifications to the initial proposal along the way and expect the science will prevail, or 2) whether to wash hands of the lot.

I'm in the first camp, slightly reluctant in a way, but recognising that MEGA has potential and want to support the science. That won't stop me (or anyone else) from pointing out the problems that are still there though.

 

[BurnA]

There are a few from people who would like the MEGA study to proceed (provided appropriate changes are mae) but there aren't very many!

I've said it before and i know many others share this view, i would like this study to proceed if the the appropriate changes are made. ( exclude White and Crawley, better patient selection )

 

[A.B.]

If Stephen then goes back to these researchers and says -

Sorry, this has all been a complete waste of time over the past year

The ME patient community does not like the MEGA study because it involves Dr X, or the protocol you have developed is not going to work, then I think it's highly likely that they will quickly depart for other diseases and be very reluctant to take any further interest in getting involved with an ME/CFS research study

That would be unfortunate, but entirely the result of Holgate's poor judgment. He should have predicted that patients would oppose a study with BPS authors. He made a strategic mistake, and we patients are being blamed for it. If he made this mistake because he was fed disinformation from BPS authors about only a small group opposing BPS research, then it's again not our fault. He trusted liars and now has to face the consequences.

I note that you don't consider the possibility of the problematic people being removed and the project going ahead with full patient support, which probably tells us something about who's really in charge. If the CMRC is unwilling to remove bad scientists from projects, then it's clear that it's simply serving those bad scientist's interests.

 

[Jan]

No Charles it's not that we do not 'LIKE' Dr X, it's because Dr X is causing harm to patients, and distorts research for her own ends. Dr X does not believe this is a physical illness and is likely to influence the whole research process. There is a petition to stop Dr X's GET on children (Magenta) with over 3000 signatures on it. How can Dr X remain in this climate?

Can we please be given the list of names of CMRC, planning groups etc.

And why is Dr X's name left off the list of researchers?

 

[Jan]

I would like this study to proceed if the the appropriate changes are made. ( exclude White and Crawley, better patient selection, ie CCC )

 

[BurnA]

But out in the real world we have a situation where Professor Stephen Holgate (who is a really decent doc who genuinely wants to help people with ME/CFS)

How about a statement from the CMRC on the PACE trial analysis as per the original protocol ?
If Holgate and the CMRC genuinely want to help people with ME they should have no problem with this. Indeed they should be first out the blocks.

 

[Jan]

And further more, if Dr X had any real decency and concern for the patients she claims to represent, she would stand down in order for this study to go ahead! It is Dr X who will be the cause of MEGA's downfall.

 

[Comet]

If Stephen then goes back to these researchers and says -

Sorry, this has all been a complete waste of time over the past year

The ME patient community does not like the MEGA study because it involves Dr X, or the protocol you have developed is not going to work, then I think it's highly likely that they will quickly depart for other diseases and be very reluctant to take any further interest in getting involved with an ME/CFS research study

Why is it never considered that Stephen could just as easily hear the concerns of patients and say to Drs. X and Y that they must step aside for the good of the patients? Our quarrel is not with the rest of the researchers.

Is it really that difficult to agree to an open data format?

How hard would it really be to include the severely ill?

I would love to see MEGA move forward! What a fantastic opportunity if could be! Patients just need to feel as though we are being heard. I am tired of being a square peg who is being continually pounded into a round hole.

I want to thank you, @charles shepherd, for all the work you do for us, even though we are not in complete agreement in this matter. And also thank you for asking what patients think about MEGA in your upcoming newsletter.

Although I can not support MEGA in its current format, I have not decided if I am going to oppose it either.

 

[daisybell]

Surely Prof Holgate must realize that trying to 'sit on the fence' while putting together the MEGA team can only result in pwme being unhappy about the whole thing. I understand of course that it's difficult for him and he probably doesn't want to get involved in the politics, but the politics is center stage in the U.K., and there's no getting away from that.

I for one, don't see myself as a vocal minority in any sense, but I'm sick and tired of the fact that research keeps coming out portraying us as psychologically flawed and not really ill. I've lost 9 years now, and I want my life back. Too many people have lost theirs - this isn't in any sense a trivial matter. I think we have the right to stand up for what we think is right without being labeled as trouble-makers. This is our lives not a playground spat.

And now I feel the need to apologize for feeling strongly - see where the years of neglect and trivialization have got me!

 

[eafw]

If Stephen then goes back to these researchers and says -

Sorry, this has all been a complete waste of time over the past year

No, if Prof Holgate really is a decent doc (who genuinely wants to help people with ME/CFS), he needs to have a good long hard look at himself and face up to the way that pwME have been treated in this country. Lives have been destroyed while people like him prioritise playing nice with his BPS colleagues over speaking out for what's right.

We are all desperate for good science - this shouldn't need repeating - we want science - but the CMRC/MEGA organisers have cocked up the public relations on this so badly and here we have all the fallout with a lot of very upset people, now being told it's all our fault !!