MEGA Questions and Answers: Latest Petition update

[Glycon]

If you dont have testable abnormalities which help point to ME I can understand then people may want a psych evaluation but one certainly isnt necessary for many who have ME.

Well, it took me about two weeks to get an MRI and in the meantime there was a highly experienced psychiatrist able to see me right away...

 

[medfeb]

Note that Fukuda doesn't require PEM or even the delayed and long-lasting fatigue in response to exertion. And I'm not sure if people realise that Canadian crtieria have the same post exertional malaise OR fatigue criterion as NICE i.e. PEM is not mandatory.

Agree that Fukuda does not require PEM and as Jason showed in a review of Fukuda studies, as few as 25% of patients had PEM in Fukuda CFS research studies.

But regarding Canadian - it does require PEM. It lists fatigue and PEM separately and requires both.

1. Fatigue: The patient must have a significant degree of new onset, unexplained, persistent, or recurrent physical and mental fatigue that substantially reduces activity level.

2. Post-Exertional Malaise and/or Fatigue: There is an inappropriate loss of physical and mental stamina, rapid muscular and cognitive fatigability, post exertional malaise and/or fatigue and/or pain and a tendency for other associated symptoms within the patient's cluster of symptoms to worsen. There is a pathologically slow recovery period–usually 24 hours or longer.​

This is not saying either PEM or fatigue - the second criteria is describing the symptom of PEM. I read the and/or as "malaise and/or fatigue" which can occur post-exertion.

Besides for making PEM optional, Fukuda doesn't provide any description of what PEM is. I don't know how NICE describes it


Partial screen shot attached.

 

[Glycon]

I read the and/or as "malaise and/or fatigue" which can occur post-exertion.

That is exactly right.

 

[charles shepherd]

Charles, As I wrote in my email, I am one of those who would like to be able to support MEGA but will not do so unless significant changes are made. These include the exclusion of Peter White and Esther Crawley from any involvement and the inclusion of severely affected patients and patients who do not attend CFS clinics.

As I'm sure you appreciate, how your members respond may be heavily influenced by how the information is presented to them. Can you tell us, as a member of CMRC, is MEA permitted to inform its member about what it considers to be the valid criticisms that have been raised about MEGA on PR and elsewhere? For instance, would you be able to inform them that many people have expressed concern about the involvement of Peter White (still an advisor) and Esther Crawley due to their promotion of and involvement with PACE, GET, BPS etc? And if you are permitted, is it something you intend to do?

Thanks again for all the time you have spent on this, and for all the work you do.

Thanks for the kind comments!

In reply to your question:

There is a great deal of (sometimes deliberate) misunderstanding and misinformation being circulated on the internet about what members of the Board are supposed to do in relation to criticism of research (or other work) that has been/is being carried out by their colleagues on the Board of the CMRC

There is no problem where this relates to constructive criticism - in both the public domain and in private

If you have followed events re PACE you will know that I have made very frequent criticisims of the PACE trial in both public and in private while Professor Peter White was on the Board

I have also criticised other research that has been carried out by other members of the Board - my letter to Pediatrics on the adolescent prevalence study springs to mind

And there is no problem if the MEA points out to its members that one of the reasons why people are opposing the MEGA trial is the inclusion of Professor Peter White and Dr Esther Crawley

 

[charles shepherd]

I know that this is supposed to be a separate MEGA thread dealing with the proposed (and ? abandoned) petition but I just don't have the time to follow everything on PR about the MEGA study

Has the proposal to send an OPEN LETTER TO THE CMRC BOARD detailing key concerns, criticisms and questions now lost momentum or been abandoned?

Because I think this should be a far greater priority for people on PR who are concerned about the MEGA study than devoting so much time and words to internal discussions that are only really preaching to the converted!

 

[A.B.]

Has the proposal to send an OPEN LETTER TO THE CMRC BOARD detailing key concerns, criticisms and questions now lost momentum or been abandoned?

I think we could finalize a letter at this point.

We need skilled writers. Please go here: http://forums.phoenixrising.me/inde...about-the-mega-study.47183/page-6#post-772761

 

[Simon]

But regarding Canadian - it does require PEM. It lists fatigue and PEM separately and requires both.
1. Fatigue: The patient must have a significant degree of new onset, unexplained, persistent, or recurrent physical and mental fatigue that substantially reduces activity level.

2. Post-Exertional Malaise and/or Fatigue: There is an inappropriate loss of physical and mental stamina, rapid muscular and cognitive fatigability, post exertional malaise and/or fatigue and/or pain and a tendency for other associated symptoms within the patient's cluster of symptoms to worsen. There is a pathologically slow recovery period–usually 24 hours or longer.This is not saying either PEM or fatigue - the second criteria is describing the symptom of PEM. I read the and/or as "malaise and/or fatigue" which can occur post-exertion.

Yes, but that means post exertional malaise isn't mandatory (minimum is post-exertional fatigue), and so is the same as NICE, surely? NICE also has a mandatory requirement for post-exertional X, where X is malise or fatigue (NICE, like CCC also requires fatigue of the non post-exertional type). Otherwise I would have expeccted CCC not to bother with the 'and/or Fatigue' rider.

 

[Cinders66]

Thanks for the kind comments!

In reply to your question:

There is a great deal of (sometimes deliberate) misunderstanding and misinformation being circulated on the internet about what members of the Board are supposed to do in relation to criticism of research (or other work) that has been/is being carried out by their colleagues on the Board of the CMRC

There is no problem where this relates to constructive criticism - in both the public domain and in private

If you have followed events re PACE you will know that I have made very frequent criticisims of the PACE trial in both public and in private while Professor Peter White was on the Board

I have also criticised other research that has been carried out by other members of the Board - my letter to Pediatrics on the adolescent prevalence study springs to mind

And there is no problem if the MEA points out to its members that one of the reasons why people are opposing the MEGA trial is the inclusion of Professor Peter White and Dr Esther Crawley

What evidence is there of deliberate misunderstanding and deliberate misinformation please? That sounds very wessely like who insists patients deliberately spread misinformation about him to tarnish him, as if there not enough of his own words. Patients often get things wrong yes but I don't think there's a twisting of things smear campaign.

I think the main reason patients suspect that even if the gagging clause isn't in force, that being in some type of coalition with the MRC has influenced charities is because since 2007 the tone has changed dramatically from calls for funding and criticism of MRC to pure promotion of them and defence (of crumbs IMO) which seems born out of feeling you're now part of their group and their pals rather than fully independent lobbying for pwME. Regarding the letter about Esther crawlers research what wasn't ever mentioned was her use conflation of the term ME with this fatigue questionnaire diagnosis from what I remember which we might have expected in a letter on behalf of patients with ME. I didn't hear at the CMRC conference a challenge to the quite weak "quality of applications/patients hassle and 1 other" establishment explanation for lack of ME research interest, except Sue Waddles our researchers don't get that", either, which is disappointing as it suggests an acceptance of not just that narrative by the charities involved but that the counter narrative - all the things wrong with the uks CFS / CBT /fatigue umbrella model isn't being voiced to get the change we need .