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

[JoanDublin]

BBC Radio 4 coverage[23]described the condition studied as ‘ME also known as chronic fatigue syndrome’.


.

It wasnt just a mis-interpretation of the media - Esther Crawley herself specifically tweeted that "1 in 60 children have ME" with a link to that study. When challenged on it she deleted the tweet but I have a screenshot that I can root out

 

[Sidereal]

It seems almost like bait and switch to divert people's attention away from the ongoing damage done by PACE and MAGENTA.

 

[JoanDublin]

It wasnt just a mis-interpretation of the media - Esther Crawley herself specifically tweeted that "1 in 60 children have ME" with a link to that study. When challenged on it she deleted the tweet but I have a screenshot that I can root out

Should have read "1 in 50" children

 

[Janice Hargreaves]

I wonder if the NHS 100,000 genome project and the ME/CFS biobank could not collaborate together to look at many of the issues that MEGA seem to be aiming at? Genomics England have already got plenty of systems in place to look into Cancer and Rare diseases. Why waste time and money reinventing the wheel?

 

[Ben H]

Somehow the fact that 12000 patients were planned had passed me by.

That, and the criteria by Crawley are an absolute recipe for disaster. With the exclusion of severe ME/CFS by criteria used i.e getting to a clinic etc, this is looking absurd.

Im really not trying to be negative but I really think this needs a complete rethink.

Also 12000 patients-do they realise how much metabolomics costs? Let alone all the other tests, even if the patients can get to somewhere and have their blood drawn. This is going to have to have massive, massive funding.


B

 

[JoanDublin]

Somehow the fact that 12000 patients were planned had passed me by.

That, and the criteria by Crawley are an absolute recipe for disaster. With the exclusion of severe ME/CFS by criteria used i.e getting to a clinic etc, this is looking absurd.

Im really not trying to be negative but I really think this needs a complete rethink.

Also 12000 patients-do they realise how much metabolomics costs? Let alone all the other tests, even if the patients can get to somewhere and have their blood drawn. This is going to have to have massive, massive funding.


B

And we thought PACE was the height of amateurism.....

 

[charles shepherd]

Somehow the fact that 12000 patients were planned had passed me by.

That, and the criteria by Crawley are an absolute recipe for disaster. With the exclusion of severe ME/CFS by criteria used i.e getting to a clinic etc, this is looking absurd.

Im really not trying to be negative but I really think this needs a complete rethink.

Also 12000 patients-do they realise how much metabolomics costs? Let alone all the other tests, even if the patients can get to somewhere and have their blood drawn. This is going to have to have massive, massive funding.


B

As I have already indicated, I am a member of the Board of the CMRC but am not involved in the planning or carrying out (if funding is forthcoming) of the MEGA research study

As you say, the costs involved are going to be massive - but I think I'm correct in recalling that the total cost is going to be in the region of £6 - £8 million

CS

 

[Yogi]

Carmine Pariante did not attend last weeks CMRC and he is a member of the CMRC board.

He does however bring this good news to us.

https://twitter.com/i/web/status/783342617773875200

 

[Ben H]

As I have already indicated, I am a member of the Board of the CMRC but am not involved in the planning or carrying out (if funding is forthcoming) of the MEGA research study

As you say, the costs involved are going to be massive - but I think I'm correct in recalling that the total cost is going to be in the region of £6 - £8 million

CS

Hi Dr Shepherd,

Thankyou for clarifying. That is a lot, but im still not sure its enough for everything they want to test, even at substantial discount/partnerships.

But hey, maybe it is. Thats the least of my concern atm. Im still struggling to comprehend how (and why?)this has all happened so quickly.


B

 

[Chrisb]

You can't say they don't have a sense of humour.

 

[BurnA]

Im still struggling to comprehend how (and why?)this has all happened so quickly.

They actually discussed this last November and still haven't applied for funding.
In fact it seems like they don't know what they are doing despite having almost a year to think about it.

 

[trishrhymes]

As I have already indicated, I am a member of the Board of the CMRC but am not involved in the planning or carrying out (if funding is forthcoming) of the MEGA research study

As you say, the costs involved are going to be massive - but I think I'm correct in recalling that the total cost is going to be in the region of £6 - £8 million

CS

Thanks for clarifying this.

So that's about £500 per patient to recruit patients, clarify diagnosis, collect samples, carry out genomic, epigenetic, proteomic, metabolomic studies, administer symptom questionnaires, data entry, data analysis, staff, etc etc.

Doesn't sound realistic to me, especially for an exploratory study that needs depth of detailed analysis in order not to miss things.

It's costing Ron Davis's team $20,000 per patient to do an in depth study. And if I remember rightly, the Naviaux study is over $1000 just for metabolomics.

So how is this supposed to work?

I wouldn't be surprised if it cost PACE £500 per patient just to recruit, diagnose, administer questionnaires, collate and analyse the results of these. They had £5 million for a 600 patient study, that's about £9000 per patient! I do understand it's a different sort of study, with no treatment involved, but still, biomedical testing is expensive.

Explain????

 

[Yogi]

Somehow the fact that 12000 patients were planned had passed me by.

B

I am slightly surprised but completely understand. There has been so much going on. With illness it is impossible for anyone to keep on top of everything. You have been working so hard and doing great work on the OMF END MECFS project as correspondent so this could easily pass by especially with PACE trial scandal going on.

We are ill and it is unacceptable that communication has been so poor by MEGA CMRC. I know this is not an oversight on CMRC but part of the continued modus operandi with research on ME CFS

Some of us need to be Cassandras just like on PACE trial and keep an eye on the dangers and problems and warn about this. This is an important job to do and we should not be duped or forced into supporting MEGA or classed as militants.

Given the smear campaign over the militant death threats rejected by a Court no one should be smeared as militant again for asking reasonable questions. I am also very disappointed at the rhetoric of patients strangling babies at birth. I find it very distasteful. This was very careless and potentially very damaging to patients especially with the false SMC orchestrated narrative having been finally shown to be false only 4 weeks ago.

 

[Ben H]

I am slightly surprised but completely understand. There has been so much going on. With illness it is impossible for anyone to keep on top of everything. You have been working so hard and doing great work on the OMF END MECFS project as correspondent so this could easily pass by especially with PACE trial scandal going on.

We are ill and it is unacceptable that communication has been so poor by MEGA CMRC. I know this is not an oversight on CMRC but part of the continued modus operandi with research on ME CFS

Some of us need to be Cassandras just like on PACE trial and keep an eye on the dangers and problems and warn about this. This is an important job to do and we should not be duped or forced into supporting MEGA or classed as militants.

Given the smear campaign over the militant death threats rejected by a Court no one should be smeared as militant again for asking reasonable questions. I am also very disappointed at the rhetoric of patients strangling babies at birth. I find it very distasteful. This was very careless and potentially very damaging to patients especially with the false SMC orchestrated narrative having been finally shown to be false only 4 weeks ago.

Thanks @Yogi

Glad its not just my brainfog!


B

 

[Chrisb]

I asked this question on another thread but will try it again here as it is currently under consideration.

Has it ever been indicated what are the numbers to be tested? There is talk of 12,000 patients (10,000 adult, 2,000 children).

But there has also been mention of a control group, as would be expected. The control group would not be "patients" unless the term were being used in the loosest possible way. Does this mean that the intention would be to test substantially more than 12,000, or is that number intended to include the control?

What sort of numbers would usually be expected to form a control in a case where the 12,000 patients are broken down into a number of smaller subgroups?

Or have I completely misunderstood something?

 

[trishrhymes]

Somehow the fact that 12000 patients were planned had passed me by.

That, and the criteria by Crawley are an absolute recipe for disaster. With the exclusion of severe ME/CFS by criteria used i.e getting to a clinic etc, this is looking absurd.

Im really not trying to be negative but I really think this needs a complete rethink.

Also 12000 patients-do they realise how much metabolomics costs? Let alone all the other tests, even if the patients can get to somewhere and have their blood drawn. This is going to have to have massive, massive funding.


B

Hi Ben, you express a problem lots of us are questioning. I've just discovered a thread that helps a bit to understand the reasoning behind such a big sample, George Davey Smith's talk last year on big data and genomics:
http://forums.phoenixrising.me/index.php?threads/the-power-and-pitfalls-of-omics-george-davey-smith’s-storming-talk-at-me-cfs-conference.43044/
I haven't read it all yet. In theory I like the idea, but I'm concerned that despite his apparent understanding that the biopsychosocial model is unproven, the he is still treating its proponents as the experts on ME.

 

[charles shepherd]

Hi Dr Shepherd,

Thankyou for clarifying. That is a lot, but im still not sure its enough for everything they want to test, even at substantial discount/partnerships.

But hey, maybe it is. Thats the least of my concern atm. Im still struggling to comprehend how (and why?)this has all happened so quickly.


B

This 'big data' study has actually been in the planning stages for quite some time and has been reported in the CMRC Board Minutes (which are placed in the public domain)

 

[charles shepherd]

They actually discussed this last November and still haven't applied for funding.
In fact it seems like they don't know what they are doing despite having almost a year to think about it.

I know that you don't like the proposed research

But that's not an accurate reflection of what has been happening

A great deal of discussion has actually been taking place - and this has involved approaches and recruitment of a considerable number of well respected researchers/scientists involved in epigenetics, metabolomics, proteomics etc - most of whom are new to ME/CFS research (which is actually a considerable achievement!)

A residential meeting with most of those involve has been held

This is going to be the largest (in terms of money and numbers) ME/CFS research study that has ever taken place in the UK - if it goes ahead

And there is a complex and quite time consuming application process involved when it comes to the funding body that is going to be approached

I don't know if you have ever put together a complex medical research grant application involving a considerable number of researchers and research centres.

If not, I can assure you that it does take many months from start to finish.

 

[Tuha]

I think this project have a huge potential if it´s done correctly and so we should be prudent with our actions and reactions.
Do we have any sign that CMRC is listening or are there some relevant patients organisations/advocates who raised our concerns? I think the research projects should always cooperate with patients. The concerns raised are also reasonable - we are just asking about the right patients selection (no oxford criteria) and they should understand that the people like White and Crawley are not at all acceptable for ME community

 

[AndyPR]

Charles,

Despite my criticisms, I, and I believe the vast majority of patients, really do appreciate you engaging with the patient community on this matter. But the fact that you feel that you have to put this much effort into, effectively, trying to convince us of the benefits of the study highlights several issues right at the start.

1. You are doing the job that AfME should be doing. As I've highlighted elsewhere, it states "Sonya Chowdhury, Action for M.E., representing the patient charity members of the UK CFS/M.E. Research Collaborative Board". So far I have seen no representation from her at all in the public domain, the only charity member of CMRC who is doing that is you. This then begs the question of why they are not doing this, what is their reason for not engaging?

2. Communication. You say information has been out there in the public domain regarding this. If we are being asked to support this why are we then expected to dig out the information ourselves - would you expect to do the same if you were asked to support something in your professional capacity, or would you expect to have your inevitable queries answered by the person asking for your support? The implicit message that we are getting at the moment is that we shouldn't worry our little patient heads about this, the grown-up scientists have done all the thinking for us and we should just sign the 'patient support' cheque.

And hovering over everything else is the spectre of the PACE trial. We, as patients, are being asked to ignore everything that has gone before in regards to research for ME in this country, while those directly involved in PACE, Peter White, and those who use the bogus results of the PACE trial to support their work, Esther Crawley et al, are allowed to sour this project by their very presence. So far, no good reason has been given for their inclusion in a biomedical research project, they are adherents to the BPS model of this disease, if they are involved then I believe we have a right to assume that they will want to fit this study into their unscientific model. They have to go.