UK CMRC Nov Board meeting - Grand Challenge confirmed, Davey Smith keen

[Seven7]

I think we are going to have to split ME from CFS, is the only way we will get rid of the Psys, Let them have the ones w unexplained fatigue and we start subgrouping and splitting. I have yet to know a CFS w/o PEM in some degree (they end up with other diagnosis).
They will never stop and we need to find a smart solution to the Psy school. Until we don't find a BUSINESS solution we will be stock. Just meet w them and say ok what do you want, negotiate and move forward. The politics and the bull crap around this has to be acknowledge and addressed as such. We can fight but it will take time and resources, I think a business meeting w the bunch and see what do u really want and if it is to save face, or what is the real issue for them, we can finally move on.

 

[worldbackwards]

They will never stop and we need to find a smart solution to the Psy school. Until we don't find a BUSINESS solution we will be stock. Just meet w them and say ok what do you want, negotiate and move forward. The politics and the bull crap around this has to be acknowledge and addressed as such.

I think Holgate's plan from the start has been to carve up CFS into little slices so everyone gets a few patients to play with and everybody will be happy. That would probably be an improvement on the current situation, although I suspect there would still be physically ill patients left out of any initial sub-groups that were found who'd remain as fodder for the psychiatrists.

But I don't think Crawley and her ilk want any of that. They want every one of us, they want us acting like we aren't sick and they want it yesterday. The system really isn't broken for them, in fact if anything I suspect they would like to make it a good deal harder for patients to access any healthcare and benefits without doing as we're told. There isn't a deal to be struck on this, which is why their involvement is so alarming. There is no price that would be worth paying.

 

[Dolphin]

I wonder could Leonard Jason get involved. He could be a useful person to have involved and to possibly argue against some interpretations of the data.

 

[Esther12]

Not surprised he follows Coyne.

He's not, mix up, Coyne follows him.

I wonder could Leonard Jason get involved. He could be a useful person to have involved and to possibly argue against some interpretations of the data.

I was thinking that too.

 

[jimells]

I'm sure she'll make sure he's all up-to-date about ME before much time passes.

And especially make sure he is up-to-date on what those Militant M.E. Troublemakers are up to, what with all their threats to write letters to newspapers and to critically appraise each research paper, etc.

 

[jimells]

It sounds like it will be years and years before anything at all comes out of this "Grand Challenge", just like the CDC "Multi-site Clinical Assessment of CFS".

Whatever happened to that study anyway? The webpage hasn't been updated since April 2013. The study started in 2012 and as far as I can tell nothing has been published yet and we have no idea when they might publish something. With the alleged renewed interest in ME at the NIH, one might think the CDC would be promoting its own work, but they aren't. Why not?

 

[SOC]

That makes it sound like you are blaming the UK patient community, SOC. I know you're not, but we don't need that sort of guilt/blame laid upon us! We have enough to deal with already.

No, I'm not. You are suffering more than any of the rest of us from terrible untruths the BPS school is spreading about ME and ME patients. I am painfully aware of that.

My point is that the UK medical system refuses to look at ME information that comes from outside the UK. It disrespects ME patients in general and has absolutely no interest in what ME patients outside the UK want or think. If any patients are going to have influence over this research, it's UK patients. The rest of us have no choice other than to rely on you to exert what influence you have because we have none.

UK patients are most certainly not to blame for bad research. You are the victims, not those responsible. However, you have whatever small influence patients can have over UK-funded research, so yes, I do rely on you to exert whatever influence you have as citizens, patients, and advocacy group members to try to make sure this research is sound. Does that mean I think you have control? Not in any way. Influence is not control. But that influence is more than any non-UK patients has, so all I can do is hope you use that influence. However small it might be, it's more than the rest of us have.

 

[SOC]

The whole point of the study is that it is intended to be a deep biomedical investigation in an attempt to objectively identify disease mechanisms and subsets.

I still don't see how they can do more than very, very basic objective testing with the pittance per patient they are proposing. How can they do a "deep biomedical investigation" with a few hundred dollars per patient? There's a reason OMF needs $25,000 per patient to do their big data research.

The words deep, biomedical, and objective simply don't fit with their proposed budget. You can't do a deep, objective, biomedical study on 10,000 patients for only $6 million. Big and subjective could be done at $600 per patient. Or maybe big, shallow, and objective. Even small, deep, and objective. But what some people seem to think CMRC is planning is not realistic. Somewhere there's a disconnect between what we understand about what they intend to do and what the researchers think they can accomplish with the given budget.

 

[Sasha]

My point is that the UK medical system [...] disrespects ME patients in general and has absolutely no interest in what ME patients outside the UK want or think. If any patients are going to have influence over this research, it's UK patients. The rest of us have no choice other than to rely on you to exert what influence you have because we have none.

I'm afraid that the UK medical system is behaving as though it has absolutely no interest in what ME patients inside the UK want or think either, @SOC. If it did, we wouldn't still be in the position.

I think the rest of you do have a choice other than to rely on us, and that's to join us in trying to exert influence. Just as 11,000 people worldwide have now signed the petition calling for retraction of the PACE-trial claims based on the bizarre "normal range" analyses, nearly 2,000 worldwide have signed a petition to ask the HHS to apply pressure on The Lancet to get PACE reanalysed.

We're all in this together. I've signed the HHS petition, which includes a request to get the Oxford studies (including PACE) ignored when it comes to the US guidelines for treating patients. I don't think I should just leave US patients alone to do that.

We've been doing our best in the UK all along. Now that #MEAction is offering an international mass-advocacy platform for us all, we should be making the most of it and supporting each other.

 

[SOC]

I think the rest of you do have a choice other than to rely on us, and that's to join us in trying to exert influence. Just as 11,000 people worldwide have now signed the petition calling for retraction of the PACE-trial claims based on the bizarre "normal range" analyses, nearly 2,000 worldwide have signed a petition to ask the HHS to apply pressure on The Lancet to get PACE reanalysed.

So far, that's the only petition, poll, etc about anything ME-related in the UK that I've been able to sign as a non-UK citizen. I've gone to some petitions and/or polls only to be told that I couldn't participate because I wasn't a UK citizen.

The NIH listens to international patients just as much as it does to US patients. Can the same be said of the NHS? When US advocacy groups do polls, do they say "only US citizens"? UK ones have only allowed UK patients. It's pretty clear that the UK environment is not into letting outside people have a say in what goes on inside the UK.

Put up more petitions that I can sign and I will. Show me that your government agencies have the least interest in what non-UK citizens have to say about UK policy and I'll sign letters to those organizations.

 

[Bob]

I still don't see how they can do more than very, very basic objective testing with the pittance per patient they are proposing. How can they do a "deep biomedical investigation" with a few hundred dollars per patient? There's a reason OMF needs $25,000 per patient to do their big data research.

The £4m figure was in relation to a possible source of funding; it wasn't suggested that's the totality of their ambitions. Perhaps it's the start of their ambitions.

 

[Bob]

Show me that your government agencies have the least interest in what non-UK citizens have to say about UK policy and I'll sign letters to those organizations.

As Sasha says, the UK agencies aren't even interested in what UK patients say. Even the Countess of Marr (parliamentarian), and the UK charities are broadly ignored, despite tremendous efforts on their part to effect change. I'm not meaning to sound defeatist - I'm not defeatist - but that's the reality of our history. I think things are improving slowly, but very slowly.

 

[SOC]

The £4m figure was in relation to a possible source of funding; it wasn't suggested that's the totality of their ambitions. Perhaps it's the start of their ambitions.

Let's hope so.

 

[Scarecrow]

I still don't see how they can do more than very, very basic objective testing with the pittance per patient they are proposing. How can they do a "deep biomedical investigation" with a few hundred dollars per patient? There's a reason OMF needs $25,000 per patient to do their big data research.

The words deep, biomedical, and objective simply don't fit with their proposed budget. You can't do a deep, objective, biomedical study on 10,000 patients for only $6 million. Big and subjective could be done at $600 per patient. Or maybe big, shallow, and objective. Even small, deep, and objective. But what some people seem to think CMRC is planning is not realistic. Somewhere there's a disconnect between what we understand about what they intend to do and what the researchers think they can accomplish with the given budget.

The CMRC minutes don't state what the total budget for the Grand Challenge as a whole or for the '-omics' part of the project is envisaged to be. 'The £4m that is being referred to is up to £4m from only one possible source - the Wellcome Trust's new collaborative awards scheme. I'm sure that the CMRC will be trying to tap a number of sources.

This article from the ME Association included a summary of Holgate's opening address at the CMRC conference. It's gives a little more detail about the Grand Challenge and it's clear that the scope is substantial. It's even possible that there could be a contribution forthcoming from Arthritis Research UK.

http://www.meassociation.org.uk/2015/10/global-mecfs-research-22-october-2015/

Professor Stephen Holgate, Southampton University (pictured), opened the conference with some encouraging news about the Wellcome Trust (a major funder of medical research) and Arthritis Research UK (another research funder that is interested in some of the overlaps between inflammatory arthritis and ME/CFS) joining the collaborative and making a substantial financial contribution.

Professor Holgate referred to some of the key conclusions and recommendations relating to nomenclature, definition, and the need to make ME/CFS an inclusive diagnosis that were contained in the Institute of Medicine (IoM) report. He also welcomed the sometimes critical but constructive analysis of ME/CFS research strategy that was contained in the National Institutes of Health Pathways to Prevention report.

Taking this forward in the form of a ‘Grand Challenge’, Professor Holgate set out a number of research priorities which all key stakeholders involved in ME/CFS research must now address:

• Agreeing on a case definition for ME/CFS

• Subgrouping (phenotyping in medical jargon) people who come under the ME/CFS umbrella in order to develop what is now referred to as personalized medicine. Professor Holgate compared the situation in ME/CFS to asthma, which used to be regarded as one homogenous disease with one basic cause and treatment. Asthma is now recognized to be a very heterogeneous condition that involves at least six different molecular and cellular pathways, with differing phenotypes responding (or not responding) to different forms of treatment (mast cell stabilization for example).

• Collecting and banking biological samples – blood, post-mortem tissue etc

• Identifying preventable and therapeutic targets for each subgroup

 

[Large Donner]

Hmm.
Hope Holgate knows what he is doing, and doesn't get outmanoeuvred by the psychs.

Its too late and he knows EXACTLY what hes doing.

 

[Sasha]

So far, that's the only petition, poll, etc about anything ME-related in the UK that I've been able to sign as a non-UK citizen. I've gone to some petitions and/or polls only to be told that I couldn't participate because I wasn't a UK citizen.

The NIH listens to international patients just as much as it does to US patients. Can the same be said of the NHS?

Hard to know - we don't have data.

When US advocacy groups do polls, do they say "only US citizens"?

Yes, some polls do. And there have been plenty of petitions that I've not been able to sign, over the years. And there have been a lot of actions that involve US patients writing to their governmental reps that overseas people can't join in with.

UK ones have only allowed UK patients.

I don't think that's been the case with all of them but there have been instances in which UK charities have asked that only UK patients sign petitions or take part in polls (presumably thinking that they'd have more influence if they were only from UK patients) or patients have used the "Number 10 Downing Street" site, which is UK-only, in an attempt to get some sort of debate in parliament.

It's pretty clear that the UK environment is not into letting outside people have a say in what goes on inside the UK.

I think that trying to restrict things to the UK has been misguided, by and large, even though I don't know how general a thing it has been.

Put up more petitions that I can sign and I will.

Likewise!

Show me that your government agencies have the least interest in what non-UK citizens have to say about UK policy and I'll sign letters to those organizations.

I have no way of showing you that. I can't even show you that my government agencies care what UK citizens think. Equally, you can't show me that the UK government doesn't care what you think. None of us can show anybody anything about what they think: we don't have access to any data or to their inner workings.

I think we just have to carry on working together as patients and supporting each other the best we can - including international actions like the ones that #MEAction is doing so sucessfully now.

 

[Large Donner]

It's pretty clear that the UK environment is not into letting outside people have a say in what goes on inside the UK.

Put up more petitions that I can sign and I will. Show me that your government agencies have the least interest in what non-UK citizens have to say about UK policy and I'll sign letters to those organizations.

Its even more obnoxious than that SOC. The UK establishment is happy to push their products all over the world and have PACE quoted as the authority on "ME can be cured with CBT and GET". They sell this propaganda to any insurance company or state health organisation who is willing to rebound that shit onto their own populations.

Yet somehow here in the UK they refuse to listen to or accept knowledge from outside these islands that doesn't fit their corrupt narrative.

Problem is there is no shortage of stupidity in agencies abroad also who will oooh and ah at some old shit Wessely says or even testifies on in other countries when it comes to ME and also GWS.

When the Dowton Abbey effect of "he must be clever he has an English accent" ever dies, then we will have more of a chance.

Until then all these wan***s have to do is mention Oxford, Knighthoods and throw in some hocus pocus claiming to be the main expert on........ with x amount of papers published and we are really up against it.

Regardless of all the science going on abroad once that gets presented to governments if it aint politically convenient for them they can too easily fall back on the "Sirs from Oxford with years of expertise in xyz".

Afteral that is the clear UK policy here and has been for decades. If you have a brand and a cornered market monopoly which feeds on its own proclamations you export it as much and as often as you can. Especially when things like insurance companies are international.

 

[SOC]

So it looks like all any patient can do about this research at this point is hope for the best.

 

[Dolphin]

I wonder could Leonard Jason get involved. He could be a useful person to have involved and to possibly argue against some interpretations of the data.

I just sent him an e-mail about it.

 

[Sidereal]

I suspect case definition (the broadest one used) will be a key part of the debate at this project developed. And I'm sure the use of severe bedbound cases will be discussed too (extreme cases have proved useful in studying other diseases.

But say mecfs is at least a dozen different diseases (turns out breast cancer is 13+, asthma is 8 distinct grroups) - a small sample is unlikely to be truly well-defined, more a hodge-podge of different subgroups. That would make it very hard to interpret the findings. A large group gets round this. Plus you need to include plenty of people at the margins, to define where mecfs groups end and more general chronic fatigue starts. That said, I would be deeply concerned if they used something as broad as the oxford definition for all patients, as it risks making most of the sample a group that might be of marginal interest (as opposed, say, to sampling Oxford-criteria patients to make sure they are well-represented, but using somethiing a bit tighter for selecting most of the cohort).

I don't know enough about breast cancer and asthma to comment on whether the statement that there are many different "diseases" (as opposed to subsets of one disease) is true or whether this is just Holgate's or whoever personal view/interpretation of the data but I don't think this analogy is quite valid when it comes to ME/CFS. Breast cancer and asthma show physical signs of disease with associated pathological findings so there is no danger of sampling people with colon cancer or panic attacks in large, broad samples. On the other hand, we have no idea what Oxford criteria select, it could be some subset(s) of ME/CFS or it could be something completely unrelated. I know a lot of people who are always fatigued but have nothing resembling ME/CFS.