UK CMRC Jan 2016 board meeting minutes

[K22]

A few quick points that people may like to bear in mind when discussing the UK Research Collaborative (CMRC):

1 Like many health professional initiatives in the area of ME/CFS, this involves a group of people who are adding a significant amount of voluntary work to an already very full workload. The Collaborative has no external funding and no permanent staff. If you add up the time taken for meetings, conference attendance and homework, in my case this means adding at least another 7 working days to a voluntary MEA etc workload that is already in excess of 50 hours a week. So there is a limit to what we can achieve with the human and financial resources available.

2 There are a number of positive developments that are taking place/have taken place as a result of the work we have been doing over the past 3 years:

3 A two day annual research conference has been established (which does take a lot of time to organise) that is almost exclusively concerned with biomedical research. The conference is open to any researcher who wishes to attend and we have managed to bring in an excellent mix of UK based and overseas researchers presenting papers who are already involved in ME/CFS research as well as researchers who are new to the subject. In addition, we have a growing number of researchers from overseas, PhD students and medical students attending. There is no other annual ME/CFS research conference taking place anywhere else in the world that is organised on this basis.

4 We are progressively bringing in major research funding organisations into the collaborative - recent examples include Arthritis Research UK and The Welcome Trust - and have established firm links with all the major government research funders (eg MRC, NIHR)

5 We are now working on Professor Stephen Holgate's Grand Challenge. This will involve the collection of a vast amount of clinical data and biological samples from over 10,000 people with ME/CFS here in the UK. A wide range of experts in epidemiology, genomics, metabolomics, proteomics etc have accepted the inivitation to attend the RC Workshop in April. This will then proceed to preparing what is possibly the largest ever reseach funding application in the history of ME/CFS being made

6 As with all collaboratives there are differences of opinion relating to almost everything we discuss and I clearly have disagreements relating to how to deal with criticism of research that involves another member of the collaborative and the role of the SMC. But these are relatively minor issues and only take up a very small proprtion of our time (the discussion on the new Code of Conduct took about 10 minutes at rhe Board meeting last week)

7 Professor Stephen Holgate has played a crucial role in setting up the CMRC - partly based on a successful research collaborative that he set up for lung disease, which is his speciality. Anyone who has met and spoken with Stephen will know that he is a very caring and compassionate physician who reallly wants to get to the bottom of what is causing this illness and to find effective forms of treatment. There aren't any other doctors around who have real influence in high places when it comes to biomedical research into ME/CFS and who can succeed in binging in colleagues like Professor Hugh Perry (Chair of MRC Neurosciences Board and a Professor of Experimental Pathology) into a group like this.

8 So, in my opinion, the positives associated with setting up the CMRC far outweigh any disadvantages

9 Would research into ME/CFS here in the UK really be in a better position if, as some people want, the CMRC packed up, or some of the charity members left? I think not…..

Dr Charles Shepherd

I don't see it as either being an in the current way or out question. Clearly people sick and like me, very severe, very long term sick WANT & NEED state intervention and funding from the major funders. I am on benefits and know what people with M.E can raise themselves is small compared to what the state can invest when it chooses eg for HIV or dementia.


My question, as someone already sick over half of my life and at this pace expecting to be so for a long term ahead is - is it enough, a fitting response etc to crack this illness & develop treatments quickly?& no I don't think it Is. Do I think the charities should ask for more, yes. Would I like to see more in line with the Gibson inquiry recommendations ie £11m ring fenced - yes. & do I think the state & medical research societies after Years of neglect, for which both Dr Montoya & Shepherd have asked apologies, are making up for their mistreatment & earnestly setting out make rapid progress? - no. Do I think long term Ill people will die as we wait at this speed of progress - yes. Is enough being done to research/ help the severe in UK - Hell no.

From what you write dr shepherd you sound as if what the UK is doing at a state level is enough & all that can be done. I find that disappointing. The charities have been "at this" for 30 years now, not 5 where our "progress" would not be so jarring as it is.

Do you think dr shepherd that MRC NIHR are doing all that can be asked of them, investing as much as can be asked of them past 10years and appropriately? I do not. Or rather I desperately hope for more. I also think the CFS umbrella, endorsed by uk charities involved is crippling & it's staggering more refinement on criteria /definitions hasn't happened which still allows Oxford & NICE criteria use in UK, polluting the research & influencing perceptions with their MUS /CF research.
At least we hear of a bigger effort on the horizon in USA. The words funding equality aren't even uttered in relation to ME/CFS over here.

PS what is the likes of Hugh Parry actually doing aside from attending these meetings?

 

[user9876]

I wonder if the Code on Conduct will have anything to try to prevent the bad behavior we've seen from researchers?

Spinning results? Encouraging prejudices about patients? Coynes and Laws' letter recognised the problem with the way some of these researchers respond to critics.

It only prevents behaviour against the special class of people who are doing peer reviewed research so it doesn't cover those who encourage prejudices about patients. It doesn't even try to hold researchers to what would be considered basic standards such as publishing trial data to the protocol and not spinning the results.

 

[Sasha]

From what you write dr shepherd you sound as if what the UK is doing at a state level is enough & all that can be done.

Where did you see that implication? I don't see it in what Dr Shepherd said.

 

[K22]

Where did you see that implication? I don't see it in what Dr Shepherd said.

That is my interpretation of what was written and from what I read generally in MEA statements and the fact I don't see any calling for or campaigning for anything else. In USA solve me/cfs held large open air meeting calling for substantial increase in NIH funds & funding equality. Jen brea, like me, believes we should actually see an attempt to make up for the decades lost. I have not seen any calls for this from UK Charities who now work with the MRC since they started working together around 2007-8.

 

[charles shepherd]

I don't see it as either being an in the current way or out question. Clearly people sick and like me, very severe, very long term sick WANT & NEED state intervention and funding from the major funders. I am on benefits and know what people with M.E can raise themselves is small compared to what the state can invest when it chooses eg for HIV or dementia.


My question, as someone already sick over half of my life and at this pace expecting to be so for a long term ahead is - is it enough, a fitting response etc to crack this illness & develop treatments quickly?& no I don't think it Is. Do I think the charities should ask for more, yes. Would I like to see more in line with the Gibson inquiry recommendations ie £11m ring fenced - yes. & do I think the state & medical research societies after Years of neglect, for which both Dr Montoya & Shepherd have asked apologies, are making up for their mistreatment & earnestly setting out make rapid progress? - no. Do I think long term Ill people will die as we wait at this speed of progress - yes. Is enough being done to research/ help the severe in UK - Hell no.

From what you write dr shepherd you sound as if what the UK is doing at a state level is enough & all that can be done. I find that disappointing. The charities have been "at this" for 30 years now, not 5 where our "progress" would not be so jarring as it is.

Do you think dr shepherd that MRC NIHR are doing all that can be asked of them, investing as much as can be asked of them past 10years and appropriately? I do not. Or rather I desperately hope for more. I also think the CFS umbrella, endorsed by uk charities involved is crippling & it's staggering more refinement on criteria /definitions hasn't happened which still allows Oxford & NICE criteria use in UK, polluting the research & influencing perceptions with their MUS /CF research.
At least we hear of a bigger effort on the horizon in USA. The words funding equality aren't even uttered in relation to ME/CFS over here.

PS what is the likes of Hugh Parry actually doing aside from attending these meetings?

You seriously misunderstand my position if you think that I believe that enough is being done in relation to management, service provision and research into ME/CFS here in the UK

This is NOT the case and what is happening at the moment is clearly NOT ENOUGH in terms of human resources, infrastructure and funding

What I am try to put over, and clearly failing, is that I feel I am doing all I can on a personal basis to try and improve the situation in relation to management, service provision and research funding

As you are probably aware, I have this wretched illness myself, am not well, and have experienced what it is like to be confined to bed with ME/CFS - following a chickenpox encephalitis - as well as having to deal with most of the practical problems that people with ME/CFS face

However, I still spend a vast amount of time helping people with all aspects of management (medical, benefits, employment etc) through the work I do for the MEA and also being involved with a large number of research initiatives - including helping to set up the UK ME Biobank and the UK Post Mortem Research Group, as well as the Research Collaborative

But there is a limit to what one person, or one charity, can do

The situation isn't really going to dramatically change unless the wider medical and research community accepts that this is a serious condition that requires their interest and input

And this is not going to happen unless more clinicians and researchers get involved - which is another thing that the Research Collaborative is trying to do

I know why you feel angry but taking it out on someone like Professor Hugh Perry, who has played a very active role in setting up the Research Collaborative, and advising on neurological research, doesn't make sense

 

[jimells]

would the Americans on here be happy if the NIH this year ONLY focused on that 1 post infectious study they've proposed?

That is the only concrete proposal since NIH proclaimed a new era, or something. It is inadequate and unacceptable. There has been no commitment to increase research funding - just more posturing and promises.

 

[K22]

You seriously misunderstand my position if you think that I believe that enough is being done in relation to management, service provision and research into ME/CFS here in the UK

This is NOT the case and what is happening at the moment is clearly NOT ENOUGH in terms of human resources, infrastructure and funding

What I am try to put over, and clearly failing, is that I feel I am doing all I can on a personal basis to try and improve the situation in relation to management, service provision and research funding

As you are probably aware, I have this wretched illness myself, am not well, and have experienced what it is like to be confined to bed with ME/CFS - following a chickenpox encephalitis - as well as having to deal with most of the practical problems that people with ME/CFS face

However, I still spend a vast amount of time helping people with all aspects of management (medical, benefits, employment etc) through the work I do for the MEA and also being involved with a large number of research initiatives - including helping to set up the UK ME Biobank and the UK Post Mortem Research Group, as well as the Research Collaborative

But there is a limit to what one person, or one charity, can do

The situation isn't really going to dramatically change unless the wider medical and research community accepts that this is a serious condition that requires their interest and input

And this is not going to happen unless more clinicians and researchers get involved - which is another thing that the Research Collaborative is trying to do

I know why you feel angry but taking it out on someone like Professor Hugh Perry, who has played a very active role in setting up the Research Collaborative, and advising on neurological research, doesn't make sense

I am not able to put together another reply at present Dr Shepherd, thank you for yours. I don't see how enquiring what specifically Hugh parry does in the field, which you have kindly answered, is in any way taking my anger out on him. He's often quoted but to me seemed a background figure, i see you feel he's a valued contributer, whereas we obviously need foreground neurologists actually doing research too, that's all.

 

[charles shepherd]

That is my interpretation of what was written and from what I read generally in MEA statements and the fact I don't see any calling for or campaigning for anything else. In USA solve me/cfs held large open air meeting calling for substantial increase in NIH funds & funding equality. Jen brea, like me, believes we should actually see an attempt to make up for the decades lost. I have not seen any calls for this from UK Charities who now work with the MRC since they started working together around 2007-8.

I don't think you are very well informed as to what the MEA has been doing/is doing in relation to campaigning in relation to benefit provision, information and support re all aspects of management, and funding for research.

It's Saturday afternoon - so I'm not going to even try and back this up by giving you lots of MEA website links

But I would suggest you have a look at the MEA report on patient evidence re safety and efficacy of CBT, GET and Pacing (the largest report ever produced), our reply to Lancet Psychiatry on the PACE trial (the only UK charity to get a letter published), our complaint about Daily Telegraph press coverage of the PACE trial (the only UK charity to send in formal complaint to IPSO), the article I then wrote for the DT, and the report of reform of the ESA Work Capability Assessment.

Regarding the MRC - of course we need more funding. But decision to set up an MRC Expert Group on ME/CFS research, which resulted in £1.5million of ring fenced funding for biomedical research, was partly the result of on-going meetings that took place at the MRC involving the MEA.

You might also have a look at the information and support we provide 24/7 on our Facebook page:

https://www.facebook.com/pages/ME-Association/171411469583186

 

[JohnCB]

1 Like many health professional initiatives in the area of ME/CFS, this involves a group of people who are adding a significant amount of voluntary work to an already very full workload. The Collaborative has no external funding and no permanent staff. If you add up the time taken for meetings, conference attendance and homework, in my case this means adding at least another 7 working days to a voluntary MEA etc workload that is already in excess of 50 hours a week. So there is a limit to what we can achieve with the human and financial resources available.

I know you are not the type of person to fish for compliments, but equally I cannot sit by and say nothing. I am a member of MEA and I have seen your work over the last 15 years both in and outside the MEA. I recall having a brief conversation with you during the break in your talk when you came to Ware. This was at the time shortly before Val Hockey left the MEA. As I recall at this time you went from being a paid adviser putting in limited hours to being unpaid and keeping the MEA together and doing a huge amount in various field for the benefit of those of us with ME. I am very impressed by what you have done and I fully support what you do on our behalf. There are others doing very good work in very specific ways but there is no one else taking on the breadth of workload that you do. There is no one else I would prefer to have represent me with your medical background and in depth knowledge of ME.

Everyone is free to have their own opinion and we cannot outlaw criticism. Unfortunately there are those who make a habit of unnecessary and inappropriate criticism. Fortunately on this forum people don't go to the extremes that I have seen elsewhere. You have demonstrated considerable tolerance.

Please keep up the good work.

 

[worldbackwards]

I am very impressed by what you have done and I fully support what you do on our behalf. There are others doing very good work in very specific ways but there is no one else taking on the breadth of workload that you do. There is no one else I would prefer to have represent me with your medical background and in depth knowledge of ME.

Everyone is free to have their own opinion and we cannot outlaw criticism. Unfortunately there are those who make a habit of unnecessary and inappropriate criticism. Fortunately on this forum people don't go to the extremes that I have seen elsewhere. You have demonstrated considerable tolerance.

Please keep up the good work.

Well said. There seems to be an assumption amongst some people on this forum and elsewhere that if the MEA waved its fist around and and took its ball in a bit more anybody would give a damn. They wouldn't. No offence to the charities who have taken this approach, but I can't say we hear a lot from them in terms of what they've achieved in terms of revising the opinions of the medical establishment, for the simple reason that refusing to engage with them doesn't put you in a stronger position, it just makes you easier to ignore.

As Dr. Shepperd says, if you want to have a conversation with these people, you have to be inside the room. If they then don't actually want to listen to you, then making a scene and stomping off is unlikely to change that. As for the CMRC, the fact that any publicly funded biomedical research is happening in the UK is a welcome change from the last few decades.

Do I think it's going anywhere? I don't know and I have my severe doubts over the people who run the collaborative and what their agenda is. But the alternative is not some flower-strewn path to victory, where we insult the medical establishment to their faces and they respond with apologies and handfuls of cash. I think the MEA is by and large playing a bad hand as well as it can without compromising their message, which is why I give them my money.

 

[Sasha]

I'm also deeply appreciative of your hard work, @charles shepherd.

I think all PWME - which includes Dr Shepherd - want more research done, and more research funding.

The fact that we haven't yet managed to get it is surely more a reflection on what we're up against rather than on our efforts and intentions.

We're all in this together and if anyone has any great ideas on how we can get more funding and better research and do it all faster, now's the time to say what those ideas are and to start implementing them.

 

[Countrygirl]

="Sasha, post: 689111, member: 381"]I'm also deeply appreciative of your hard work, @charles shepherd.

I think all PWME - which includes Dr Shepherd - want more research done, and more research funding.

The fact that we haven't yet managed to get it is surely more a reflection on what we're up against rather than on our efforts and intentions.

We're all in this together and if anyone has any great ideas on how we can get more funding and better research and do it all faster, now's the time to say what those ideas are and to start implementing them.

Dr @charles shepherd has worked tirelessly (!) on our behalf for nearly three decades and I for one am deeply grateful.

We as a patient community all owe him a deep debt of gratitude. To have coped with his own illness with working so hard for us deserves much respect.

Thank you, Dr Shepherd for staying the course and for supporting us. We are very grateful for all your hard work despite the difficult circumstances and appreciate all you do.

 

[Esther12]

This is a largely critical post, so want to start by saying that I am grateful for all Charle's work on a clearly difficult task.

To me, it seems that the positives Charles has mentioned from the CMRC are all just potential positives at the moment. None of them can outweigh the problems things like PACE have caused to the way which patients are being treated now. There is also some reason to be wary of all of them. If the CMRC is getting in the way of attempts to raise standards for research, and criticise those producing the poor quality work that harms patients, then it leading to more research is a bit of a double-edged sword. I would not want more funding for research if the quality of research is not dramatically higher than that which we've seen from the UK over the last two decades.

Anyone who has met and spoken with Stephen will know that he is a very caring and compassionate physician who reallly wants to get to the bottom of what is causing this illness and to find effective forms of treatment. There aren't any other doctors around who have real influence in high places when it comes to biomedical research into ME/CFS and who can succeed in binging in colleagues like Professor Hugh Perry (Chair of MRC Neurosciences Board and a Professor of Experimental Pathology) into a group like this.

Personally, I don't really care about how compassionate and caring people are. Does Holgate understand that patients are right to be angry about the PACE trial? To me, he often gives the impression of thinking that patients should know their place and let researchers get on with messing up patients' lives, as they'll probably self-correct in the long-run. I am concerned about his comments in that Mosaic article too, whcih I don't think anyone has ever got a proper explanation of.

If Holgate had taken charge twenty years ago, I'm sure we'd be in a better place now. But I worry that he wants to ignore that past twenty years of problems with mainstream UK research quackery, and I don't think that's a reasonable thing to do.

 

[Simon]

If the CMRC is getting in the way of attempts to raise standards for research, and criticise those producing the poor quality work that harms patients, then it leading to more research is a bit of a double-edged sword. I would not want more funding for research if the quality of research is not dramatically higher than that which we've seen from the UK over the last two decades.

That code of conduct still hasn't been agreed, still an if.

Agree there would be no point in the CMRC if it didn't raise standards and, frankly, if it didn't move beyond the fixation with psychosocial research. The Grand Challenge is aiming for 10k patients, looks like the total budget will be substantially greater than that for PACE (still currently the world's biggest and most expensive cfs study) and people like George Davey Smith are on board (it's strongly biomedical too). That wouldn't be happening without Stephen Holgate and the CMRC, and I believe patients would be worse off without it. It's not always an easy journey but I'm delighted Charles is there to argue the case.

 

[Sasha]

So what would you summarise are we up against in uk in your view and then we can see what's being done in uk to overcome it. Thanks

I'm afraid I can't do justice to your long post but briefly, in my view, what we're up against in the UK is largely the dominance of the BPS model over the past decade or more, and the crushing medico-political influence of its supporters.

This is why the advocacy concerning the PACE trial is so important right now. It's very hard to fight from within the UK itself, for the reasons that James Coyne has spelled out.

 

[K22]

As you kindly replied Sasha I repost my long ramble:

IF more should have been being asked of MRC & NIHR than what was given the past 8 years, this isn't said by charities and patients aren't asked to in anyway lobby or petition so basically we have been accepting the not good enough without any resistance. In fact I feel patients are supposed to suck it up as better than nothing. Again i find it odd that in USA theres high demands on NIH yet cheers and defence of (Hugh Parrys own words "a small start" ) so far by the MRC . I dont see patient advocacy encouraged in uk like in the states. There's more transparency in the USA and solve me#CFS don't devote their time talking about the NIH in terms of how well things are going, which is all I have heard the past years from charities involved with the MRC. WHEN we got the only ever big grant in 2011 MEA readers were told that exceeded even USA funding - sounds good until you realise that NIH funding of CFS is terribly low and they also average $5m/yr, whereas our money was more a one off. Then put in context of 20 years of back payments due - Not so good after all but as written earlier, it's always presented as the most we can hope for in the circumstances.

I never advocated staying out completely of the CMRC or its predecessor which ran from 2007-8,, just having higher demands which then, if not met could be opened up for patients, led by charities to lobby for. My concerns re the MRC
Led groups is it makes charities essentially partnership with the MRC, that is how AFME described it, where effectively all criticism of the MRC ends -& I don't just mean this year but when they started working with charities between 2004-8. I dont want to expand this to being about what charities do in re. To benefits or the PACE trial , specifially for this thread point for me, on a funding and state medical societies front , is we have just told how things are progressing nicely & there have not been campaigns for more. That going well is less than £2m bio research funds ever + the deaths of my generation severely affected Lois Owen, Lynn gilder dale, Emily Collingridge, & lily (founder of severe m.e awareness day) over the past 8 years.

Charity involvement in the MRC isn't just one over worked voluntary Dr Shepherd (the MEA could ask for more volunteers too) , meruk are there, & also going nearly everywhere MEA go is the AFME CEO on £70,000/ yr and that is another charity who I've not seen do anything but tell us how good things are going since their MRC COLLABORATION from 2004, indeed Holgate is on their own research board which I feel completely undermines charity independence. I think i am right in saying that dr shepherd has worked many years in private medicine, I think on the ME front, so it's not like working in M.E doesn't help provide an Income nor is the fact he works voluntarily something which puts his organisation above criticism over the 30 years they've run. I say that because there's a sense that again as its voluntary therefore we can't have any criticism or ideals about the advocacy and representaion we hope from national charities & who claim to work on patients behalf.

there's also the question of how much the UK cfs framework eg, the continued use of Oxford criteria +absence of physician led services, the ignoring of the IOM report etc ,which maintain the status quo disinterest, is being lobbied against by the charities so we can see progress. AFME only make noise about benefits or care - Not state funding or service type & provision. The establishment goes unchallenged on these fronts.

The grand challenge was discussed in depth on phoenixrising and we have yet to see what this broad study, probably including many with fatigue syndromes outside even fukuda cfs breadth, will reveal. I think my disappointment reading these minutes was the realisation that that will be our lot in the UK for this year probably, and my fear is, especially if it costs a lot, that it will be our lot for the next few years too. Cost alone doesn't mean great research for the long neglected severely ill, it just means that the umbrella might well be vast to encompass the millions people like Crawley claim are affected by CFS.

I was also disappointed again at the minutes of no mention of severe m.e. For the plenary sessions & wanted to highlight again that the severe don't wish to be excluded anymore.

I reiterate I come from a position of being severely ill many years. I haven't attended meetings & had nice chats & come home thinking at least one day things might be better & being glad some people are at least doing something, I've suffered beyond what most people could conceive and I've watched friends & aquaintances drop over these years of unchallenged low level state research funding. Isn't it a scandal we got no money from MRC untill 2011 & obvious that since then we were being made to wait for new rations and that the 2011 funds was intended to be "our lot" for some time. The 2011 rounds saw applications from Newton etc declined because it would have meant exceeding our £1.5m budget.

Like Esther I too am not concerned with how nice Holgate seems - he didn't have to write In support of Wessely in the press, he didn't have to consult Wessely over name & contacts for the CMRC, or write as he did for mosaic & the fact he does reveals allegiances I really would rather aren't there. HOLGATE seems to me intent on steering the UK, all points of view valid, all criteria equal, vast umbrella forward & probably hasn't met many severe sufferers so I fear the drive say in Ron Davis is totally absent from many in the CMRC. From a funding perspective the severe are getting nothing from the state, the NIHR is funding MUS & GET & the focus at collaborative conference is still on fatigue across illness, which tends to be the lesser type "living with" fatigue.

I write badly as I'm extremely cognitively challenged. I dont have energy to go into what might be positives on things well done or niceties to soft en what I say. I can not, from laying here watching for progress 8 years, accept that uk have done all they can for this illness and we can't expect more or think progress good enough. I do appreciate that there's a limit on individuals capacity in terms of time and energy but I'm afraid no, as I do not know if I will survive the next year, from a severe perspective, like many , I can not regard the past 30 years a success. - leaving the severe issue out of conferences was one missed opportunity.

Today's MRC funded new Crawley research paper coverage & no main charity giving it the criticism it deserves, or any criticism at all, despite it effectively re branding CFS & Me as Oxford fatigue (disastrous PR) & using lousy methodology, just increases my feeling we aren't being fought for as we should be & the CMRC is týing us down.

 

[charles shepherd]

As you kindly replied Sasha I repost my long ramble:

IF more should have been being asked of MRC & NIHR than what was given the past 8 years, this isn't said by charities and patients aren't asked to in anyway lobby or petition so basically we have been accepting the not good enough without any resistance. In fact I feel patients are supposed to suck it up as better than nothing. Again i find it odd that in USA theres high demands on NIH yet cheers and defence of (Hugh Parrys own words "a small start" ) so far by the MRC . I dont see patient advocacy encouraged in uk like in the states. There's more transparency in the USA and solve me#CFS don't devote their time talking about the NIH in terms of how well things are going, which is all I have heard the past years from charities involved with the MRC. WHEN we got the only ever big grant in 2011 MEA readers were told that exceeded even USA funding - sounds good until you realise that NIH funding of CFS is terribly low and they also average $5m/yr, whereas our money was more a one off. Then put in context of 20 years of back payments due - Not so good after all but as written earlier, it's always presented as the most we can hope for in the circumstances.

I never advocated staying out completely of the CMRC or its predecessor which ran from 2007-8,, just having higher demands which then, if not met could be opened up for patients, led by charities to lobby for. My concerns re the MRC
Led groups is it makes charities essentially partnership with the MRC, that is how AFME described it, where effectively all criticism of the MRC ends -& I don't just mean this year but when they started working with charities between 2004-8. I dont want to expand this to being about what charities do in re. To benefits or the PACE trial , specifially for this thread point for me, on a funding and state medical societies front , is we have just told how things are progressing nicely & there have not been campaigns for more. That going well is less than £2m bio research funds ever + the deaths of my generation severely affected Lois Owen, Lynn gilder dale, Emily Collingridge, & lily (founder of severe m.e awareness day) over the past 8 years.

Charity involvement in the MRC isn't just one over worked voluntary Dr Shepherd (the MEA could ask for more volunteers too) , meruk are there, & also going nearly everywhere MEA go is the AFME CEO on £70,000/ yr and that is another charity who I've not seen do anything but tell us how good things are going since their MRC COLLABORATION from 2004, indeed Holgate is on their own research board which I feel completely undermines charity independence. I think i am right in saying that dr shepherd has worked many years in private medicine, I think on the ME front, so it's not like working in M.E doesn't help provide an Income nor is the fact he works voluntarily something which puts his organisation above criticism over the 30 years they've run. I say that because there's a sense that again as its voluntary therefore we can't have any criticism or ideals about the advocacy and representaion we hope from national charities & who claim to work on patients behalf.

there's also the question of how much the UK cfs framework eg, the continued use of Oxford criteria +absence of physician led services, the ignoring of the IOM report etc ,which maintain the status quo disinterest, is being lobbied against by the charities so we can see progress. AFME only make noise about benefits or care - Not state funding or service type & provision. The establishment goes unchallenged on these fronts.

The grand challenge was discussed in depth on phoenixrising and we have yet to see what this broad study, probably including many with fatigue syndromes outside even fukuda cfs breadth, will reveal. I think my disappointment reading these minutes was the realisation that that will be our lot in the UK for this year probably, and my fear is, especially if it costs a lot, that it will be our lot for the next few years too. Cost alone doesn't mean great research for the long neglected severely ill, it just means that the umbrella might well be vast to encompass the millions people like Crawley claim are affected by CFS.

I was also disappointed again at the minutes of no mention of severe m.e. For the plenary sessions & wanted to highlight again that the severe don't wish to be excluded anymore.

I reiterate I come from a position of being severely ill many years. I haven't attended meetings & had nice chats & come home thinking at least one day things might be better & being glad some people are at least doing something, I've suffered beyond what most people could conceive and I've watched friends & aquaintances drop over these years of unchallenged low level state research funding. Isn't it a scandal we got no money from MRC untill 2011 & obvious that since then we were being made to wait for new rations and that the 2011 funds was intended to be "our lot" for some time. The 2011 rounds saw applications from Newton etc declined because it would have meant exceeding our £1.5m budget.

Like Esther I too am not concerned with how nice Holgate seems - he didn't have to write In support of Wessely in the press, he didn't have to consult Wessely over name & contacts for the CMRC, or write as he did for mosaic & the fact he does reveals allegiances I really would rather aren't there. HOLGATE seems to me intent on steering the UK, all points of view valid, all criteria equal, vast umbrella forward & probably hasn't met many severe sufferers so I fear the drive say in Ron Davis is totally absent from many in the CMRC. From a funding perspective the severe are getting nothing from the state, the NIHR is funding MUS & GET & the focus at collaborative conference is still on fatigue across illness, which tends to be the lesser type "living with" fatigue.

I write badly as I'm extremely cognitively challenged. I dont have energy to go into what might be positives on things well done or niceties to soft en what I say. I can not, from laying here watching for progress 8 years, accept that uk have done all they can for this illness and we can't expect more or think progress good enough. I do appreciate that there's a limit on individuals capacity in terms of time and energy but I'm afraid no, as I do not know if I will survive the next year, from a severe perspective, like many , I can not regard the past 30 years a success. - leaving the severe issue out of conferences was one missed opportunity.

Today's MRC funded new Crawley research paper coverage & no main charity giving it the criticism it deserves, or any criticism at all, despite it effectively re branding CFS & Me as Oxford fatigue (disastrous PR) & using lousy methodology, just increases my feeling we aren't being fought for as we should be & the CMRC is týing us down.

I'm sorry that you clearly do not seem to find my contributions on PR on the MRC or CMRC, or the work of the MEA in supporting, informing and campaigning for people with ME/CFS here in the UK to be particularly helpful or satisfactory

As I have already explained, I only have a limited amount of time to devote to ME/CFS social media and I'm afraid I have to restrict this to providing information and advice and briefly answering questions - rather than getting involved in detailed discussions/arguements that follow on from long email responses that raise numerous questions and challenges

So I'm not going to go any further than the points about my position re the MRC and CMRC that I have already posted above

I appreciate that this will be regarded by some as being unwilling to take part in a detailed debate on the MRC and CMRC

However, there are very few doctors who are willing to get involved with ME/CFS social media and at the moment I cannot think of any others apart from myself and Jonathan Edwards who are willing to do so on a regular basis




What I will briefly clarify for you is my income - because people who seem to like to discuss this on the internet publish inaccurate and sometimes defamatory information

Yes, I subsidise the work I do for the MEA etc on a purely voluntary basis from my private income and have done for many years

At present, this means I do 50 hours or more of unpaid work for the MEA etc per week

I now do approximately one day per week of private work - which includes legal, media, lectures etc

The MEA pays my expenses relating to MEA related meetings, DWP, parliamentary and research meetings etc but no fees of any form are involved

Otherwise, I do not claim any of my routine adminstrative costs from the MEA -

Overall, this means that I do all this voluntary work at a financial loss

All claims for my travel expenses are submitted with receipts to the MEA on a monthly basis and are recorded in our monthly accounts

CS

 

[jimells]

@K22 I don't live in UK so tell me to bugger off and I won't be offended. From my perch on the left side of the Atlantic it looks like the ME Association is doing what it can with little to work with. The problem is they can't tackle the psychobabblers on their own - there needs to be a separate group of people willing to be troublemakers.

Policies change when the social cost of them gets too high, and nowhere has those costs been raised enough. In spite of all the noise in the US, the policies haven't really changed beyond window dressing - there is *still* no increase in research funding here, either.

Perhaps it could be useful to think about how labor disputes are resolved. No labor union would expect their negotiators to win concessions without the support of workers to go on strike or threaten to. Dr Shepherd is beating his head against the wall of the CMRC while outside there are no picketers to back him up. We have to find some way to change this situation. It's the same in the US - until we can somehow organize a more militant approach to pressuring NIH, the policy will not change.

That doesn't mean we should expect the ME Association to change - I'm suggesting a separate independent group. During the US civil rights movement Dr King and Malcolm X had very different approaches to a common goal. While they did not see eye-to-eye, my understanding is that they recognized that each had a different but equally important role to play.

The AIDS documentary "How to Survive a Plague" has film of Fauci (he's been at NIH forever) being burned in effigy, IIRC. We need to adopt those sorts of tactics, but with no real support outside the patient community (otherwise known as "healthy people"), I don't have any idea how it can be accomplished.

 

[Esther12]

@K22 I don't live in UK so tell me to bugger off and I won't be offended. From my perch on the left side of the Atlantic it looks like the ME Association is doing what it can with little to work with. The problem is they can't tackle the psychobabblers on their own - there needs to be a separate group of people willing to be troublemakers.

I agree with a lot of this post... but the trouble is that Action for ME are so incompetently docile that MEA are stuck in the role of the troublemakers!

I think MEA would do a good job of being the gentle insiders, but Action for ME (and AYME for younger people) really end up undermining our ability to set up a competent insider/outsider dynamic. It seems that MEA are not great at playing the trouble-maker role, don't really want it, but are a bit stuck with it. We really need Action for ME to be less rubbish.

 

[halcyon]

Smells like more censorship is in the pipeline.

After witnessing the latest tripe from vice-chairman Crawley you can see what all the fuss is about. I question whether she even has the credentials to be involved in this collaborative, let alone chairing it.