MEGA research for M.E./CFS: White & Crawley listed as involved

[Sasha]

Why aren't Esther Crawley, Peter White or Simon Collin listed on the MEGA team? Did you forget to add them? Was it an accidental omission? : http://www.meresearch.org.uk/.../mega-study-pledge-your...

Hi **. We listed the people making up MEGA, not the advisory groups - people can read them for themselves at the main MEGA page. There will probably be a series of these groups, such as the patient advisory groups (one adults, one children), feeding information in over time.

 

[AndyPR]

(Non-)Response on Facebook from Sonya Chowdhury regarding criteria

 

[Simon]

(Non-)Response on Facebook from Sonya Chowdhury regarding criteria
View attachment 17523

Got a link to that (I'm hopeless at facebook)? I think patients need to be part of this discussion.

 

[AndyPR]

Got a link to that (I'm hopeless at facebook)? I think patients need to be part of this discussion.

This should take you straight there
https://www.facebook.com/actionforme/posts/10154524791488209?comment_id=10154527326263209

 

[Yogi]

Made me chuckle. The elephant in the room.

I have posted it on Millions Missing page but it also has #CMRC2016 and it is relevant given Peter White is involved with MEGA.

Will this get the message across to AFME and the CMRC?

https://twitter.com/i/web/status/781502796524875776

Retweet if you can.

 

[leela]

I wonder if there is a way to legally divorce them from any activity regarding ME patients after the PACE debacle?
If there is no precedent, perhaps this is the case to set one.
They lied, cheated, colluded, and covered up, all at the expense of very sick people. Surely they should not be permitted to continue.

 

[Denise]

"MEGA Petition

Posted on September 29, 2016 by mrspoonseeker


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."

Link to the full post. (I think it is worth reading and sharing.)

 

[Hutan]

@Simon, I think you communicate with Prof George Davey Smith? And he is involved with this MEGA Project - I think I heard that he may even be heading/coordinating it.

Have you, or could you, speak to him about the awfulness of finally getting the PACE trial exposed as manipulated rubbish and then having the authors of that study proposed as advisors on MEGA? Do you think he understands the issues?

 

[Glycon]

There was a workshop in the spring, whose participants were an interdisciplinary group of scientists and four ME/CFS researchers. There is also the "MEGA team" (as per Action for ME's website), which consists of the members of that interdisciplinary group, plus one ME/CFS researcher not named Crawley, White or Collin (Julia Newton, by far the most legit of the four).

The most charitable explanation of the discrepancies is that the petition originates from the workshop. Though a statement of clarification concerning CBT/GET guidelines and PACE/MAGENTA research would be nice nevertheless...

 

[TiredSam]

not sure if this has been posted
report is here http://www.meresearch.org.uk/news/mecfs-funding-report/

Thread here:
http://forums.phoenixrising.me/inde...itutional-funders-over-the-past-decade.47096/

 

[Boronia]

This seems to be the crucial nugget that needs to be made clear in order for us to avoid PACE-style observation bias. However I would not expect that information to be available before the research application has been submitted. I think it is worth seeing if any of our influential members such as @Jonathan Edwards or @charles shepherd were willing to write to the principle investigator and ask that the research is planned in such a way as to make it as transparent as possible, including the full publication of raw data.

Would that degree of transparency reassure the people here who have reservations about the study?

I think that there are more crucial nuggets that need to be known before an informed decision to support or not can be made. A very important one is what is the patient selection criteria? Action for M.E have stated on their Facebook page that this is yet to be decided. A weak criteria will make the study useless for those with M.E. There are probably more crucial nuggets missing too.

 

[Cheesus]

I think that there are more crucial nuggets that need to be known before an informed decision to support or not can be made. A very important one is what is the patient selection criteria? Action for M.E have stated on their Facebook page that this is yet to be decided. A weak criteria will make the study useless for those with M.E. There are probably more crucial nuggets missing too.

What do you mean by weak? I do not know if you have read the entire thread but there has been a bit of discussion on this. My view is that the criteria should be broad enough to take in atypical patients.

I see this is your first post. Welcome to the forum

 

[BurnA]

My view is that the criteria should be broad enough to take in atypical patient

Can you explain this and how it would be helpful.

 

[Cheesus]

Can you explain this and how it would be helpful.

Yes, I put my view forward in the post quoted below (it is a response to another post, so click the arrow to see the context)

If you take a broad criteria and scoop up everyone who might be thrown into the CFS basket, then collect a lot of data on them, you will see different groups. If you apply strict subjective criteria to the patients in order to allow certain groups in but exclude others, then any objective data you have will be distorted by that initial subjective lens.

if there is a difference between 'real ME' and people with PVFS who barely scrape into the CDC criteria, then we'll see that here. If there is an atypical subgroup that doesn't meet the CCC or ICC criteria and has a distinct metabolic signature, then we'll again be able to tease that apart with this study.

This is a deeply heterogenous disorder and at some point we're going to have to study everyone who falls into the basket rather than only those core patients who have a strictly defined version of the disease. If there are some relatively uncommon subgroups, then those people would forever fall through the gaps if we only study strictly defined patient cohorts.

 

[BurnA]

You might see different groups but if you get enough random people into a room you might also think they belong in different groups by the clothes they wear or the color of their eyes or whatever.
What will it tell you about ME?

 

[AndyPR]

Invest in ME Charity posted to the Invest In ME Facebook group;

MEGA study - #ProjectSinkhole ?

We have been asked our opinion on the so-called MEGA study which patients are being asked to support by signing a petition.

From the little information we can ascertain -

We believe this will, if it gets accepted, suck away all funding for ME research for the next few years and give an impression that something is being done that will produce benefits for people with ME.
Yet we do not have confidence that this will lead to any effective remedy for people with ME.

A lot of data is proposed to be collected on a broadly defined patient cohort.

What is this data being used for?

It is stated –
“If we do this, we think we may be able to develop new treatments. We also think we may be able to target treatments more effectively for those that will benefit.”

We wonder what treatments they are thinking of developing whilst including those investigators who believe that ME is a faulty illness belief amenable to changing one’s thoughts.

We feel the petition has no other meaning but showing an element of patient public involvement.
And we also wonder if this proposal has already been accepted by some in positions of influence and that this petition may be mere cosmetics rather than substance.

There is no description of how “ME/CFS” patients are diagnosed before entry. Are there enough trained doctors to diagnose 12000 ME patients in a consistent way or can anybody with unexplained fatigue put themselves forward?

This resembles the shambles of the PACE Trial again and patients are already falling for it.

The history of MRC policy toward ME does not engender trust – numerous “expert” panels that produced nothing, PACE Trial funding, funding of research into other illnesses such Sjogrens under the banner of ME research – yet we are still no wiser, patients are still ill.

We have already requested that the MRC refuse to allow grant applications from, or provide funding to those investigators who were involved in the flawed PACE Trial. This project proposes some of those behind PACE or supporting it will be involved. We have no confidence in these people.

Like a sinkhole we feel this will suck away available funding for ME - and also remove many years of additional opportunity for good research.

We feel this is yet another way that patients will be given a line that something is happening – yet based on the experiences of the past it will be just more years waiting – and then little to show for it other than to benefit some whom we feel should not be involved in research into ME and some organisations.

Having scarce funding sucked away like this is one thing – losing more lives to it delays is another and we cannot accept that.

This research will take years and require so much further analysis that it is difficult to see how it benefits patients any time soon.

We cannot support this.

 

[BurnA]

IIME hit the nail on the head.

 

[TiredSam]

What a relief to read such a clearly stated position.

 

[Hell...Hath...No...Fury..]

Wow that was superb to read!

 

[BurnA]

We can't let it happen again. Under no circumstances. Anybody or any research associated with PACE should never be supported.

In fact the whole CMRC should be disbanded now. If it's willing to associate with researchers like White and Crawley it's pointless.