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

[Yogi]

Invest in ME amazing as usual.

Wow great response. Completely hits the nail on the head.

Amazing charity!!!

10/10 for IIME

Not like the sham charity/bps front with their shill.

I have a good nose to smell a rat and knew this was dodgy and a trap. Good to see it confirmed by IiMe and so well articulated.

We need to boycott this petition and call this out for what it is or set up well worded alternative petition with all concerns

- hopefully MEaction could help whenever they are recovered from Millions Missing? @JaimeS

 

[Sidereal]

I love IiME. Fake ME organisations like AfME should be disbanded because they are harmful to patients' interests. This is PACE Part II.

I totally agree with IiME comments regarding this toxic MEGAcolon, and their astute observation that MRC funding allocated to supposedly ME research a few years ago actually went to studying other fatiguing diseases like hep C infection, PBC and Sjögren's. I ranted about this on PR years ago saying that the funding will be used up by the likes of Pariante to study their existing interests like psychoneuroimmunology of hep C and that zero useful published insights would come out of this on ME and that's exactly what's happened.

Given the alarming lack of research talent in the UK and the medieval attitudes toward ME/CFS I think we're better off with no British research being done or MRC funding research groups abroad, people who are actually serious about studying this.

 

[Large Donner]

@charles shepherd

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.

 

[AndyPR]

Counter petition thread http://forums.phoenixrising.me/inde...-the-mega-petition-brainstorming-stage.47107/

 

[Dolphin]

I think you have a point here, @Yogi. Its crucial that we don't get blinded by the word "biomedical", because some of the new types of measures and theoretical frameworks the BPSers are using do look "biomedical". But at the core of them is the same old "illusory perceptions of illness" crap.

I'm thinking of some of that recent Harrison-Edwards research on the role of the brain in CFS. Which is, by the way, a carefully concealed redescription of a psychosocial account within a neural conceptual framework.

We need to know what exactly will be done before we support anything. But in my view anything that focuses on "the brain" should not receive our highest support right now for two reasons. First, its is often unclear whether such research is really "biomedical" or just modernised terminology for expressing much the same sentiments as before. Second, even if it passes that test, and offers a totally new insight into the mechanisms underlying CFS, it will only lead to treatments involving psychoactive drugs.

No, we need to support basic research into the role of more peripheral systems in CFS - e.g., immune, metabolic - ones where new discoveries might actually lead to new and effective treatments.

Start at the bottom, then work up.

Fair points. But there doesn't seem to be reason to believe that there will be too much focus on the brain in this study. They don't have the budget to do imaging or direct studies of the brain.

 

[Denise]

But there doesn't seem to be reason to believe that there will be too much focus on the brain in this study. They don't have the budget to do imaging or direct studies of the brain.

Did I miss their current funding?
I thought the petition talked about using the petition to show the support of the signators and to take that along with their application when they go to potential funders in January. I took that to mean they currently had no budget at all.

 

[Dolphin]

Did I miss their current funding?
I thought the petition talked about using the petition to show the support of the signators and to take that along with their application when they go to potential funders in January. I took that to mean they currently had no budget at all.

I may have extrapolated a little. But the study involves "12,000 men, women and children with ME/CFS" along with thousands of healthy controls presumably.

The "study will investigate, in terms of DNA, RNA and other molecules, the distinctive genetics, epigenetics, proteomics and metabolomics of people with ME/CFS, using a very large number of samples".

The initial figure I heard talked about was £4 (?) million. Divide that by 20,000 and its £200 each (divide by 16,000 and its £250). If it was increased to £7,000,000 (which is huge in UK terms), that would only be £350 per person based on a sample of 20,000, or £437.50 per person based on a sample of 16,000.

These sorts of figures lead me to think there won't be imaging studies and the like.

 

[Denise]

I may have extrapolated a little. But the study involves "12,000 men, women and children with ME/CFS" along with thousands of healthy controls presumably.

The "study will investigate, in terms of DNA, RNA and other molecules, the distinctive genetics, epigenetics, proteomics and metabolomics of people with ME/CFS, using a very large number of samples".

The initial figure I heard talked about was £4 (?) million. Divide that by 20,000 and its £200 each (divide by 16,000 and its £250). If it was increased to £7,000,000 (which is huge in UK terms), that would only be £350 per person based on a sample of 20,000, or £437.50 per person based on a sample of 16,000.

These sorts of figures lead me to think there won't be imaging studies and the like.

@Dolphin - thank you. I spaced or missed the funding amount. I agree that that amount/participant probably would not include imaging, etc.

 

[AndyH]

Perhaps a petition to the Welcome Foundation may be more effective?
Perhaps the WF could make the funding conditional. i.e. removal of A4ME and funding of only biomedical research.

I suspect that the WF have got wind of the PACE issues and so the CMRC might have to show that there's a patient call for the reseaerch.

Food for thought.

 

[Cheesus]

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?

They're not going to be random people though. They're going to be people with a diagnosis of ME. What it will hopefully tell us is something about the breadth (or possibly lack there of) of differences in the pathophysiology of people with ME.

 

[Valentijn]

They're not going to be random people though. They're going to be people with a diagnosis of ME.

Uh, no. If the criteria are too broad (Oxford/chronic fatigue), it really is random people. Fatigue is a symptom of damned near everything, and ruling out a few of those diseases doesn't mean that whatever's left is ME.

 

[Cheesus]

Uh, no. If the criteria are too broad (Oxford/chronic fatigue), it really is random people. Fatigue is a symptom of damned near everything, and ruling out a few of those diseases doesn't mean that whatever's left is ME.

But if it is too narrow then it doesn't mean what we have is just patients with 'real ME'. We need to strike the right balance.

 

[Jill]

I 've never heard of patients being asked to sign some form of petition confirming their approval of a study and somehow this is going to ifnluence a funders decision? Does this really happen?? Are there an precedents? I feel like I'm going crazy. Why would any confident researchers even think of doing this ?? I've just caught up on all this and whilst I agree Davey Jones sounds like a good guy etc. I can't help but think that this will be underway, and Davis will announce they patients can send blood to Stanford and have good tests done for under 500$. I think their work and possibly the work of others will v rapidly supercede whatever these guys are planning. Wouldn't tough Action for ME people with a barge pole. They has a weak as magazine back in the 1990s - I don;t suppose much has changed.

Sorry if I've got the wrong end of the stick - but I'm not signing this fishy smelling petition - its too weird for me.

 

[Boronia]

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

Thanks very much for the welcome.
I read the discussion on this. What I mean is a weak criteria like that of the PACE trial. I think that it depends on who they purport to be studying and how the final conclusions will be presented. I would be worried that a broad criteria would then be spun at the end to be conclusive information about M.E patients.

 

[Simon]

@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?

Hi Hutan

George Davey Smith is heading up MEGA, but I have no contact with him, though I've written about his work. He's a bit of a stellar scientist (perhaps one of the most influential life scientists in the worldd) so incredibly hard to get hold of. I don't think I can help. But I hope MEGA will engage with patients on this issue, it's clearly getting in the way of patient support for a project I think could be absolutely brilliant - the world's largest biomedical study bringing leading-edge technology to bear on a vast cohort.

In case it's useful, here are a couple of articles I've written about MEGA, originally called the Grand Challenge by Stephen Holgate. who's brainchild this is.

His presentation to the Forward ME committee at the House of Lords
2013 A Dozen Different Diseases? Stephen Holgate Calls for Radical Change in ME/CFS Research
My write up about omics and the relevance to mecfs, based on a CMRC conference talk last year
2016 The Power and Pitfalls of Omics: George Davey Smith’s storming talk at ME/CFS conference (Pt 1 of 2)

 

[Cheshire]

https://twitter.com/i/web/status/781784110935179264

https://twitter.com/i/web/status/781785846789931012

 

[slysaint]

Having a look on the AfME site:
https://www.actionforme.org.uk/research/research-we-fund/
Looking thro the research projects they have supported/are supporting little bells started to ring...........(and I'm not talking about my tinnitus)

edit: Hmmm
"
Chaired by our Trustee Jane Young, the Research Panel is responsible for helping develop Action for M.E.’s research strategy, overseeing the research strategy and ensuring it’s implemented properly, and monitoring research initiatives in the field of M.E. on behalf of the Board of Trustees to determine their relevance and potential value to people with M.E.

Jane is joined on the Panel by two additional Trustees, our Principal Medical Adviser, an independent research scientist, our CEO, and a minimum of three patient/carer Supporting Members who have research experience (not necessarily in the field of M.E.)."

Out of interest, does anyone know who the other members are?

 

[Yogi]

https://twitter.com/i/web/status/781784110935179264

https://twitter.com/i/web/status/781785846789931012

Well that is very sly and dodgy. Set up a petition to garner support then when people ask questions say on a tweet you will provide the information on a blog afterwards. Will she- when and on what date and what information will be provided.

I ask again- would you sign up for something that you know nothing about?? Why set up the petition in the first place.

Petitions are for citizens without power who wish to alert the government to something.
The CMRC are the medical establishment - MRC, Wellcome, NIHR, Crawley, White, etc. Why do they need to use petitions. Anyone else find this odd?

Someone used the term "brainless cheerleaders". That is exactly what we are being asked to be.

There will be scant information provided later but we will have thousands of people who have unwittingly signed up by that point that they won't need to involve patients at that point and can do absolutely whatever they want given they will have patient support (AFME and petition).

Remember AFME supported PACE in 2003 and without patient involvement it would not have gone ahead.

Deja vu. Like we're back 13 yrs to 2003.

Given AFME tweeted this a lot of their social media followers will not be aware of the full PACE scandal. They have rarely provided any information over the last year of the fraud of the PACE trial and will unwittingly have signed up as they will not be aware of PACE scandal or MAGENTA.


I bet $100 to anyone no good can come out of this.

 

[Sidereal]

The study, as currently presented, would seem to be of very limited value, regardless of inclusion criteria, since the amount of money per patient will not be enough to do detailed -omics characterisation of the sample, it will just cover the costs of researchers' salaries, recruitment and useless epidemiological questionnaire based research into psychosocial risk factors which, as @Woolie pointed out, will then be spun into prognostic factors for response to CBT/GET.

I don't see why such a large, unfocused investigation is a good idea. A large sample does not make a study good, often it's quite the opposite. We now have serious clues as to where to look regarding metabolomics. Should the MRC/Wellcome not fund a replication of this work first, or a study that expands on the existing findings, if they're serious about ME/CFS research? Why throw millions of pounds into this MEGA black hole when a much cheaper and smaller study might bring more useful information to the table? There is no need for a cohort of 12,000 since GWAS is not needed. This is an acquired not genetic disease and absolutely no money should be wasted on searching for SNPs with tiny effect sizes when other areas like metabolomics and immunology desperately need funding.

I think the approach that the NIH intramural study and Davis/Naviaux are taking, which is extremely detailed characterisation of a small sample, is the better way to go and I think this proposed study smells more of people wanting to keep the lights on in their labs for years to come while pretending to do something useful. The whole project seems designed to bamboozle the patients into thinking that something great is being done.

 

[aimossy]

@Rose49 I feel a bit cheeky. Hope it is OK that I tag you here so you can see this. This is a 12k cohort. It would be interesting to know what Ron Davis thinks of the MEGA project if he has time to look at the info about what it is proposing to do and sees the patient concerns about it. That's not a demand of course but his opinion I'm sure would be of high value. It seems more information may come out regarding the project apart from what we have heard so far...