Counter petition to the MEGA petition, brainstorming stage

[snowathlete]

Yes - a sub group are!

I know you were baited a bit but is that really helpful or appropriate? It comes across as very dismissive and superior.

 

[AndyPR]

I'm also amazed at the power that we as patients now have. Apparently, merely with a petition, we can scare researchers away with the click of a mouse. I'm off to refine my technique so I can scare specific researchers away....

 

[Mrs Sowester]

I would suggest as democratic way forward that

1. someone here starts a members only thread dedicated to summarising the main objections, bullet point style (no discussion - just statements).
2. after a set time, either 24 or 48 hours perhaps, these bullet points are presented in a poll in a second thread.
3. after another set period of time objection points that raise over a certain percentage of the votes are collated by someone who can craft a good open letter.
4. Someone writes it

 

[worldbackwards]

I'm off to refine my technique so I can scare specific researchers away....

Young men, borderline sociopathic or psychopathic...

 

[A.B.]

If the CMRC is so concerned about researchers being scared off, what about these false allegations of death threats and harassment? It's easy to see how this could have led to a scarcity of researchers. What better way to attract more researchers by announcing the good news that this was false?

 

[AndyPR]

Young men, borderline sociopathic or psychopathic...

Hahahahaha, maybe "middle-aged honorary woman", you might have me though on the second part.

 

[A.B.]

I would suggest as democratic way forward that

1. someone here starts a members only thread dedicated to summarising the main objections, bullet point style (no discussion - just statements).
2. after a set time, either 24 or 48 hours perhaps, these bullet points are presented in a poll in a second thread.
3. after another set period of time objection points that raise over a certain percentage of the votes are collated by someone who can craft a good open letter.
4. Someone writes it

I have a created a thread for the purpose of step 1, leaving the other steps open for the moment.

http://forums.phoenixrising.me/inde...cate-key-concerns-about-the-mega-study.47183/

 

[slysaint]

Tony has now put this MEGA statement on the MEA website for all to see and some people may find the website version easier to read:

http://www.meassociation.org.uk/201...irth-says-dr-charles-shepherd-3-october-2016/

I am concerned by this with regards to selection criteria of participants:
"The nearest information we have was the reply from Dr Esther Crawley in which she stated that patients will meet NHS diagnostic criteria for ME/CFS and will be recruited from the NHS hospital-based referral centres for people with ME/CFS";
What is the definitive NHS diagnostic criteria?, as it varies according to when it was made and by whom.
Similarly the CCC and ICC have never (as far as I know) been used for diagnosis by the NHS.
Plus the reply comes from Dr Crawley; I don't think I need to expand on that.

 

[BurnA]

Wow - I wasn't expecting any solid support for my suggestion of an open letter on PR!

You really shouldn't be so surprised - we are actually a reasonable bunch here !

And it had been mentioned already on this thread that if there was a better way than a petition we would prefer it.

I don't think we are particular fans of petitions but in the absence of official & effective communication channels we sometimes have to resort to them.

Someone should let MEGA know this too, we are petitioned out thanks.

Thanks for contributing it is appreciated.

 

[BurnA]

Would it be counter productive to communicate with the Wellcome trust ?

 

[charles shepherd]

Would it be counter productive to communicate with the Wellcome trust ?

My advice would be to definitely leave the Wellcome Trust out of it - certainly at this stage

They are not yet at the stage of assessing a formal proposal

If an open letter is the way your members on PR want to go, I would suggest that you concentrate on preparing a constructive open letter to the CMRC that clearly communicates the key concerns, criticisms and questions that are being raised about the MEGA trial by a significant section of the ME/CFS patient community

 

[Wildcat]

.
@charles shepherd wrote:

"...I asked the question on patient selection at the conference. The nearest information we have was the reply from Dr Esther Crawley in which she stated that patients will meet NHS diagnostic criteria for ME/CFS and will be recruited from the NHS hospital based referral centres for people with ME/CFS"

.
Recruiting from the NHS CFS referral centres excludes many long term patients who did not seek referral/diagnosis from the centres, who had been pacing for years, or who seek private treatments anyway as the clinics offer so little, recruiting from the centres also excludes more severely sick patients.....

Why are they using the NHS diagnostic criteria? Isn't it time the MRC did research on CCC/ICC patients? After all the CCC has been in place since 2003 and the ICC since 2011. I no longer expect UK research to produce useful information let alone treatment on Myalgic Encephalomyelitis (as opposed to chronic fatigue) within my lifetime.

.

 

[Hutan]

Perhaps I am stupid, but I can't see any difference between
1. an open letter on PR setting out our concerns and questions that then gathers expressions of support and is sent to the CMRC, and
2. a petition on a site like change.org setting out our concerns and questions that then gathers expressions of support and is presented to a recipient or recipients that are yet to be determined

apart from:
1. by keeping it on PR, its reach is diminished with respect to gathering support;
2. by sending it to the CMRC only it makes it very easy for them to go - 'ah, that's from those hot-head baby-stranglers on PR' and file it in the bin.

Can anyone explain?

Also Dr Shepherd, I know you are working to improve things for PWME and so that is why I can't understand why you are willing to have Crawley and White involved in this research. What am I missing? Do you not agree that Crawley and White have caused and continue to cause much harm to people with ME?

I had to laugh about this title from the MEA website
http://www.meassociation.org.uk/201...irth-says-dr-charles-shepherd-3-october-2016/
Give this MEGA project a chance to fly – don’t try to strangle it at birth, says Dr Charles Shepherd | 3 October 2016

Whoever wrote that heading clearly hasn't read @Graham's latest blog.
http://meanalysis.blogspot.co.nz/2016_10_01_archive.html
which is discussed here
http://forums.phoenixrising.me/inde...king-off-satire-pace-trial.47163/#post-770756

Highly recommended reading.

Just recently, I was in the town centre, watching people, full of life, walking around, and it occurred to me that if it wasn't for their false gravity beliefs, they would be able to fly. Really fly that is, not in planes or hang-gliders, but swoop through the air like Superman.

 

[flybro]

@charles shepherd

Did the MEA support PACE?

 

[Wildcat]

.
.
@charles shepherd ... a couple of years ago you stated on this site that "we always knew that the CMRC would be a 'broad church'" ... in response to questions about why PDWhite, Esther Crawley and other psychosocial leaning researchers were involved.
.
Well no, we did not know that from the beginning.
.
Its of great concern that the CMRC, as proposed by Stephen Holgate first at the RSM conference of 2008, has moved from proposing serious 'omics' ME Research to proposing broad based fatigue research. As if we need more of that!
.
The selection criteria are of the greatest concern.
.
You talk about studying the "umbrella of CFS/ME" (or ME/CFS), but that "umbrella" was created by the very people who dispensed with the fairly well defined ME and created the broad fatigue based diagnostic criteria, and who designed the clinics to work with fatigue, rather than ME..

.
Will the CMRC proposed research ever get round to studying Myalgic Encephalomyelitis?
.

 

[Simon]

Recruiting from the NHS CFS referral centres excludes many long term patients who did not seek referral/diagnosis from the centres, who had been pacing for years, or who seek private treatments anyway as the clinics offer so little, recruiting from the centres also excludes more severely sick patients.....

Yes, respresentation is important. But those comments above are true about so much biomedical research in general. Quite of lot of studies use self-selected samples of teh wiliing (these often have incredibly high levels of patients with post-grad qualifications an an immediate red flag). In other words, most research to date, including probably just about everything quoted approvingly on PR, has questions about how representative samples are. Large clincis are likely to be more representative. Ron Davis's study is about the only one I know of with severely-afffected patients (thankfully the UK biobank now has banked samples from 50 severely-affected patients, but as the biobank points out, these patients are themselves unlikely to be representative of the wider severely-affected patient population (conveniencce sample).

 

[BurnA]

Perhaps I am stupid, but I can't see any difference between
1. an open letter on PR setting out our concerns and questions that then gathers expressions of support and is sent to the CMRC, and
2. a petition on a site like change.org setting out our concerns and questions that then gathers expressions of support and is presented to a recipient or recipients that are yet to be determined

apart from:
1. by keeping it on PR, its reach is diminished with respect to gathering support;
2. by sending it to the CMRC only it makes it very easy for them to go - 'ah, that's from those hot-head baby-stranglers on PR' and file it in the bin.

I don't think the intention is to keep it on PR - my understanding is that it would be sent to the CMRC.

I think the general reason is that a letter is a more conventional method of communication and that we shouldn't be using petitions at the first opportunity.

 

[BurnA]

But those comments above are true about so much biomedical research in general.

Yes, but that doesn't mean they aren't a concern. Comparing a study to other poor studies doesn't make that study any better. I think the point needs to be addressed better or at least acknowledged.

 

[Wildcat]

.
@Simon .... you wrote, re my last post on recruiting from the UK CFS Clinics: "those comments above are true about so much biomedical research in general. Quite of lot of studies use self-selected samples of teh wiliing"


PWME in the UK actively AVOID the CFS Clinics.
.

So MEGA will not have a run of the mill self selection process which is typical of studies on other diseases.

PWME avoid the clinics, or leave the clinics care when they realise that their actual disease (ME) is not being addressed or even acknowledged. The CFS clinics will not yield patients representative of ME.


The problems inherant in the CFS Clinics will feed into the the MEGA study.
.
The clinics were used to recruit for PACE.

Really - if PWME are to have any confidence in MEGA, both diagostic criteria and means of recruitment/who is being studied, will have to be fully addressed.
.

 

[Hutan]

I don't think the intention is to keep it on PR - my understanding is that it would be sent to the CMRC.

No, I meant hosting it on PR while expressions of support are accumulated, before sending it off, as opposed to hosting it on a website like change.org before sending it off.

A letter could be posted on either PR or change.org and expressions of support sought before sending it off to the CMRC. Are people thinking that something hosted on change.org has to have demands rather than questions and concerns?