MRC £1.5m research announcement + ME Association statement

January 27, 2011


Press statement issued this afternoon by the Medical Research Council:

MRC invests £1.5m to encourage further CFS/ME research

Thursday 27 January, 2010

The Medical Research Council (MRC) is committing £1.5m for research into the causes of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME). The aim is to promote new and innovative partnerships between researchers already working in the CFS/ME field and those in associated areas, such as pain and fatigue. The aim is also to encourage and support more high-quality CFS/ME research proposals.

CFS/ME is a complex and debilitating condition with a diverse range of symptoms. Profound physical and mental fatigue is the most well-known, while others include pain, disturbed sleep patterns and concentration and memory problems. Each patient experiences their own personal combination of symptoms. CFS/ME affects around 250,000 people in the UK.

The funding call will focus on one or more of six priority areas identified by the MRC’s CFS/ME Expert Group in consultation with research leaders in related areas and representatives of two major CFS/ME charities:

• Autonomic dysfunction (malfunction of the nervous system)
• Cognitive symptoms
• Fatigue
• Immune dysregulation (e.g. through viral infection)
• Pain
• Sleep disorders

Full details of the funding call will be published here by mid-February 2011 following consultation with the MRC CFS/ME Expert Group: http://www.mrc.ac.uk/Ourresearch/ResearchInitiatives/CFSME/index.htm#P60_3922. The deadline for submitting proposals will be around June 2011, to allow time for new partners to discuss and develop their research ideas.

Ends

For more information or for an interview, please contact the MRC Press Office on 0207 395345 or email press.office@headoffice.mrc.ac.uk

———————————–

Dr Charles Shepherd, medical adviser to The ME Association and a member of the Medical Research Council Expert Group on ME/CFS research, comments:

“The ME Association very much welcomes the decision by the Medical Research Council (MRC) to fully accept the list of biomedical research priorities that were drawn up by the MRC Expert Group on ME/CFS research last year.

We are also very pleased to note that £1.5 million of ring -fenced funding has been allocated to specific areas of biomedical research that were identified by the Expert Group. This is a guaranteed position on research funding for a specific disease that the MRC seldom takes.

These two decisions represent a very significant shift in the way the MRC views ME/CFS research and they should ensure that research into the underlying physical cause of the illness is no longer something that is only funded by charities such as The ME Association. As a result of this announcement we also welcome the opportunity for the charity sector to co-fund high quality biomedical research in partnership with the MRC.

We would like to thank Professor Stephen Holgate, Chair of the Expert Group, for the way in which he has persuaded the MRC to both encourage and fund innovative biomedical research into ME/CFS at a time when there are severe restraints on new government funding initiatives”

Additional information:

The full list of biomedical research priorities identified by the MRC Expert Group can be found in the Minutes of the prioritisation meeting, chaired by Professor Hugh Perry, which drew up the list. The Minutes can be found here:

http://www.mrc.ac.uk/Utilities/Documentrecord/index.htm?d=MRC007174

60 thoughts on “MRC £1.5m research announcement + ME Association statement”

  1. Would they have announced this now if there wasn’t the Commons debate on the subject next week …… not a chance.
    But now they will claim that they have made (a piffling amount of) new money available to support biomedical research and so attempt to take the sting out of the debate.
    I sincerely hope that our MPs are wise enough to see through what’s going on.
    £1.5m is pocket money. We need at least 10 times this much putting into biomedical ME research, immediately ….. and that’s before XMRV really explodes !

  2. This 1.5 million is a gesture. It will not fund the research that is needed. Who will decide where this money is spent? The same people who have obstructed robust biomedical research into this disease before? Will this piranha be wasted on a few sleep studies or cognitive studies?

    Why not replicate Lombardi et al., the XMRV paper? Why not replicate the work of Gwen Kennedy that shows evidence for a persistent viral infection? Or are we going to go around in circles again, with the MRC contributing nothing to this field!

    They wasted about 5 million on the flawed PACE trial, when do we get the rest of that figure back for serious research into ME?

  3. O dear and I am sorry guys but:

    ‘Woohooo!’

    ‘Every little helps’ and it isn’t the amount that is important it is the direction of research towards causation and….

    No mention of psycological research!

    ‘Woohooo!’

    Now we are getting somewhere.

    From tiny acorns great oaks grow…

    Thanks to all that have pushed this forward – I know it is only a beginning, but it is a beginning nonetheless.

    For some I feel I have to ask when will anything ever be enough?

    1. You are very easily pleased Firestormm.
      How many meaningful studies do you think £1.5m will actually fund?
      Serious researchers, who may have been interested in getting into the field of ME/cfs, will regard this sum as derisory and completely inadequate, given the size of the task.
      Good researchers don’t go into fields where there is no money. Hence, this inadequate level of funding will act as an ongoing deterent.

  4. Not a lot of money but this is a significant step forward in that, for the first time, the MRC has ringfenced a pot of money for ME/CFS research, something it has repeatedly ruled out in the past.

    This also linked to Prof Stephen Holgate’s Expert group looking at biomedical research for ME/CFS and which consults with ME charites.

    I think we should encourage the MRC in this new direction.

  5. Dr Charles Shepherd

    Having spent a considerable amount of time over the past two years attending meetings, workshops, doing literature searches and reviews etc, etc I do feel a bit pissed off to see some of the very negative knee-jerk comments surrounding this very important announcement.

    Turning the MRC round to accepting the need for biomedical research is rather like turning an oil tanker round.

    Yes, it has taken far too long – but the MRC moves slowly and this is a body that has only funded research into the psychosocial model in the past. So what has been achieved has not been an easy task.

    In addition, the MRC has ring-fenced £1.5 million to help fund the list of biomedical research priorities that we identified.

    This is an almost unique position for the MRC to take.

    Sometimes you just have to stop knocking an insitution like the MRC and give them a bit of credit when it is deserved. For example, a letter of thanks to Professor Stephen Holgate, who has worked so hard on this and supported us all they way, would be a nice gesture if anyone feels so inclined.

    Why is this so hard for some people to do?

    Dr Charles Shepherd

    1. You really don’t get it, do you ?

      Have you never read “And the band played on” ? – because this is a repeat performance.

      Yes the £1.5m is good – well done for helping to secure that.

      However, it is the cynical timing of it that I don’t think you really appreciate.

      Consequently, our MPs will turn up to the Commons debate on Wednesday and come away having been told that all is well and ME research is now adequately funded ……. just like the Reagan administration did with AIDS research in the early 1980’s

      1. Dionysus – that’s just the scenario we hope to avoid, through careful briefing of MPs before the debate. Backbenchers are a highly sceptical bunch, too -they won’t accept any old tosh from the Government benches.

        But we haven’t put all our eggs in one basket. The Swales’ debate, while very welcome, won’t be the end of it. We’re not naive enough to believe that, for one moment.

        It’s just another step, hopefully forward. Just like the MRC announcement this week.

        We really do get it!

        1. Hi Tony.

          What’s the best way to contact Prof Holgate?

          I would appreciate a means of contact – am not at my best at the moment and will send letter tomorrow if I am able.

          Thanks for all of this Tony and of course Dr Shepherd and the team.

          Firestormm

          1. The Minister, Paul Burstow’s response to Ian Swale’s statement turned out to be a real disappointment. A demonstration (if one were needed), of the widespread ignorance of the issues that still exists in our Members of Parliament.

            The MEA clearly have a lot of lobbying work to do.

    2. Letter penned and will be on its’ way tomorrow.

      Have also written to MP re the Debate and requested his attendance and have further noted the MRC decision.

      I cannot speak for others – certainly not the majority and I do wish other people would refrain from doing so – but as I said earlier I am delighted by this news.

      Naive and easily pleased I may be but a hearfelt thank you to the MEA and Prof Holgate.

      1. Lots of people are writing lots of things. Wishing that others would say nothing, while you put across your point of view is restrictive.

    3. “Sometimes you just have to stop knocking an insitution like the MRC and give them a bit of credit when it is deserved. …………..Why is this so hard for some people to do?

      Unfortunately there is a proportion of M.E/CFS sufferers and carers who have adopted a combative approach to anything that doesn’t accord with their very particular conception of what M.E is, and what it is not. The fact that other people have varying views supported by their own experience has no influence upon the ‘true believers’ whose fundamentalism allows no compromise.

      None of this would matter much, were this not played out in the public fora of the internet where M.E sufferers as a illness group appear almost uniquely to invest huge energy (what irony !) into disparage those medical researchers they deem ‘not acceptable’, while at the same time lauding barely, and often downright non, scientific approaches to M.E/CFS.

      Reading many of the comments here, not to mention the various unattributed forums, the general public could be forgiven for thinking that the claims about M.E being a wholly mental health issue, are actually true.

      IVI

      1. They have not spent this money yet, so what credit should be given?

        Use of the word ‘combative’ is not an argument for anything. And what conception of ME are you referring to? No one has mentioned their conception of ME here, including you.

    4. christine standing

      Dr. Charles Shepherd,

      I want to thank you for your work and your input here. It is your hard work and that of Professor Holgate that benefits us.

      You were rightly distressed at some of the comments on this thread. Perhaps this is the only place where people can ventilate their frustrations, maybe in the hope that the purse-keepers can see their pain?

      I look forward to seeing the MRC biomedical research and hope that the ICD-G93.3, a legal instrument ratified for use in the UK, will be adhered to.

  6. I do not agree with the negative comments posted here. Tearing everything down is no way to make progress, and however much we may disagree with other parties, we must retain a healthy respect for their view and position.

    I read the announcement earlier and shed a tear. I’m sure we’d all like more, but this is a very important step. I had a letter from Paul Burstow MP last week where he explained how ministers have no influence over the MRC, that there aren’t enough research submissions, that the XMRV research is conflicting, etc, etc, and yet here we are, only a few days later, and the MRC is publicly, actively, seeking submissions. And not just submissions, but submissions on specific subjects that suggest a focus on biomedical research, not psychological management techniques. These words are music to my ears: “Immune dysregulation (e.g. through viral infection)”. I don’t care whether it’s because of Ian Swales’ work or not, but it does look like the independent MRC has had its arm twisted a little.

    My understanding is that the WPI completed their original research for an amount not so different to £1.5m, and I suspect a replication study could cost less. It’s double what was spent in 2009, and it proportionately a great deal more will be going into medical research than historically, on top of what is being done through charitable funding. I very much hope the WPI research is replicated here.

    I am very appreciative of everything that all those involved have done to move us closer. Government moves slowly, but moving it is, and in the right direction.

  7. This is the same body that has just thrown out Professor Hoopers PACE Trial complaint! A study that is clearly flawed, and probably worse. How is anyone meant to trust these people? They have to prove themselves to the community first. People owe them nothing at this time.

  8. If they gave the 1.5 million to the WPI, or funded an actual replication study of Lombardi et al. I will change my mind. But not before action has been taken.

    1. Had this money gone to the WPI I for one would have wheeled myself to the doors of the MRC and beaten them down with my stick.

      But why haven’t the WPI made an application? Makes me wonder…

  9. The Government is being mislead on XMRV, and the MRC have no interest in a justified complaint about the PACE trial. Nothing has changed. If we pretend for the next year that it has, sit back and wait for the money to be spent, how can anyone be sure it will go on robust science that is needed?

    If the Department of Health or MRC were genuine about correcting their failures, the PACE trial complaint would have been taken seriously and that study would never be published. They would also not be telling the public what they have about XMRV. Controversial is incorrect! The evidence of that retrovirus being associated with ME is overwhelmingly strong. We already have a published validation study from the NIH/FDA, Lo et al. There are more on the way. Finally, the amount is too small. Are they really interested in the most common neurological disease in the UK?

    Only action and published research will change my opinion, not words. Nor more money thrown at the same biomedical research denialists.

    1. ‘The evidence of that retrovirus being associated with ME is overwhelmingly strong’

      Rubbish. If it was there would be concord. Where are the replication studies? Why have the WPI not released the original samples for retesting?

      1. There is already one positive validation study published. More are on the way. No one has attempted to replicate Lombardi et al. so there wouldn’t be a replication study would there.

        The WPI have shared samples with anyone who wants them. UK researchers are refusing, they are not adhering to the scientific method. Lo et al. used samples, so has Hanson and Singh. Both will publish soon. The evidence is very strong, don’t be mislead by hyped press releases.

      2. Forgot to mention. The WPI also shared samples with the CDC and Van Kuppeveld. Neither or these groups included those results in their papers.

        The following is from an article from the Netherlands back in May 2010:

        Dr. Francis Ruscetti of the renowned NCI – a U.S. government agency – told Ortho that he hopes this controversy will be over in 2011. He is especially surprised about the fact that the investigators of the UMC St. Radboud concealed in their publication that the Americans found traces of XMRV in the same blood samples from the Dutch patients. “I do not know how they
        think they get away with this ethically,” said Ruscetti. “I do not think this is good science.” Ruscetti pointed out again that the WPI, the NCI and the Cleveland Clinic applied four procedures in their research. “In the negative studies only one procedure was applied.” Ruscetti also ventilated his annoyance over what he calls the “whisper campaign” about contamination.
        According to the Nijmegen researchers, the Americans contaminated or polluted the Dutch blood samples.

        Among others Ruscetti is supported by Prof. Dr. John Coffin, who is linked both to the NCI and Tufts University in Boston. He is considered one of the most prominent retrovirologists in the world. “People have raised the issue of contamination, ” said Coffin. “But nothing is known about this. There is not a single shred of evidence to support these rumours. Much of the
        research is done at the NCI, in the laboratory of Francis and Sandra Ruscetti. They have a long experience with these viruses and are very cautious.”

        The 24 samples tested by the CDC were not reported in their paper as I have said. They also tested them for mouse contamination and found none.

      3. If the XMRV connection is false, how and why would Maureen Hanson be conducting the very thorough investigation into causation and pathogenesis that she is currently engaged in ? http://projectreporter.nih.gov/project_info_details.cfm?aid=7977530&icde=4356584
        I understand that Dr. Marcus Conant is also involved in this study and his record during the San Francisco AIDS epidemic speaks for his extremely good instincts when it comes to recognising retroviral infections.

  10. It is easy to forget the large amount of work that happens behind the scenes to make a any progress in research or treatment for ME and I am grateful to all those who have helped to make this happen.
    Unfortunately progress in this area has been slow for so many years and those affected by it so disenchanted as they struggle to manage their own illness.
    My initial reaction was to wait and see before I believe anything good might be happening but Dr Shepherd’s remarks made me realise I am becoming a ‘glass half empty’ sort of person. Since I personally have done nothing to promote the cause of those suffering from this illness, at least I can recognise the large amount of work that others continue to do on my behalf.

    1. No one is forgetting, and they are grateful to people who are trying to get these things to happen. It’s not about being negative, but about how the questions will be answered. If in two years time the money has gone to say Ether Crawely or Peter White, for sleep studies or cognitive behavioural research, what will have changed.

      The UK Department of Health accepts ME is neurological, they accept the WHO coding of G93.3. Why does the MRC and NICE not? Are they not a part of the Department of Health? Will all these new studies use useless criteria like the Oxford, Empiric, or Fukuda definition? Or are we going to get progress through use of the Canadian criteria? What disease will they be studying, the symptom chronic fatigue or ME?

      1. I can understand fear and despair JT but are you not with all these comments letting things get a tad out of proportion in your response to this news?

        Are ‘you’ grateful? Or do you simply feel that the efforts of others on your behalf deserve scorn? And I don’t mean the MRC.

        In this – albeit cautious if welcome news – has the MRC not acknowledge the ME/CFS Committee direction?

        Can I not take it as a sign that things are changing? Am I not allowed to feel a little hope? Maybe sleep a little better and share some good news with my family – if only with caution?

        You taking that away from me JT and Dionysus?

        Want do you want? Will you only be happy when you have a cure for yourselves or vindication?

        What is it really behind all these comments?

        If I get some headlines in the paper that is read by my sceptical family and friends despite my own 12 years of pain because of this news and the Debate in February – you going to deny me that comfort as well? Critise the news coverage as being inadequate perhaps?

        You guys really drag me down you really do. I am all for debate but put a sock in it now please.

        1. Nothing is out of proportion in my comments. They have nothing to do with anyone who is working hard to change things. Be hopeful by all means, but don’t be naive.

          Right now the MRC may not have acknowledged anything. How can they ignored the PACE trial complaint and be genuine with this. Where will the money actually go? Questions must be raised now, while we can.

          I think you are believing what you want to, not asking the right questions, and thinking things have changed before we have proof. I will not stop saying this until we know where the money is going. The truth is they should be spending about 20 to 30 million a year on this disease. We have to keep pushing for more, or people will remain sick. The PACE trial won’t change that, but somehow that can alter NICE’s actions, and the DWP. Can you not see all this.

          1. christine standing

            Agree JT. The ICD-G93.3 is a legal instrument ratified by the UK. How dare organisations waste public money on studies that refuse to acknowledge this?

            A neurological illness requires neurological studies, not psychiatric ones.

            I understand that the Countess of Mar is advocating a Judicial Review on this matter.

  11. I am a bit disappointed in Dr Shepherds expressed response to sufferers’ views re this. Ofcourse it is a positive results & we are grateful to those who have worked hard to achieve this with the MRC. If a plan of action had been decided & funding designated within a reasonable time frame of 6 months to a year there would have been more celebration & we also really would like huge investment in research to make up for the years wasted.

    However one has to understand the perspective on this of the very ill who have lost so much and have felt acutely neglect for decades. I think “progress” is perceived differently by those so kindly working for the cause & by long term extremely ill patients, many of whom are campaigners too.

    I myself am profoundly ill and sent the below to the MRC in exasperation on Tuesday before they issued their statement.

    >> Dear Sir,
    >>
    >> I am writing to you to share some real life experiences of severe ME.
    >>
    >> Due to the necessity of ME patients having had to be relatively “functionining” in order to participate in the management research you have chosen to focus on exclusively thus far I would suspect that you perhaps are not very familiar with the reality of severe ME. Indeed ignorance of it’s destruction of young lives could be the only justification for you taking so long to begin encouraging the biomedical research you now, finally, have accepted is vital.

    >>
    >> I implore you to watch this 2 minute video on YouTube which shows some of the country’s bedridden with ME(by Vicky) :
    >>
    >> http://www.youtube.com/watch?v=AUPkja02uR4&feature=youtube_gdata_player

    >>
    >> If you can not spare the time I have included some stills taken from the video & a link to a moving account of her daily struggles by one badly affected but young, brave woman.
    >>

    A personal story

    http://stonebird.co.uk/contributors.html#lifewithme

    >> As the you tube video asks, Can you imagine a young person having to spend day after day , month after month, year after year disabled & poorly in bed?
    >> We don’t need to imagine, that’s our lives with severe ME.
    >>

    >> Now imagine “living” this grim existence whilst the Government body with the power to encourage the finding of medical answers ( the MRC) dawdle & proscrastinate as if your life & suffering didn’t matter at all.

    >>
    >> I see that the ME Association are STILL waiting for your
    >> “announcement about the list of ME/CFS biomedical research priorities, along with research funding, that have been sent to the main MRC Board by the Expert Group on ME/CFS research”.

    >>
    >> Please can you tell me what has happened at the MRC between June’s research priorities meeting & now & exactly why there has been this massive delay in making a statement & getting things started?

    >>
    >> Your website states
    >>
    >> ” In 2008 the MRC set up a new group, the CFS/ME Expert Group.”
    >>
    >> Overall you’ve taken MONTHS & MONTHS to sort out this plan for ME/CFS research.
    Here, in 2011! you still have nothing underway in terms of biomedical research to actually *help* sufferers.
    >> How on earth can you justify this? Especially when you consider the MRC’s history of negligence re. ME & that biomedical research should have been funded back in the last century!!
    >>
    >> All that precious time gone whilst we, invisible in our cocoons of misery, feel our lives & dreams just further tick away. Do you care?

    >>
    >> I hope that the media I have included has opened your eyes to how those with very severe ME are existing whilst waiting for you to act.
    >>
    >> Yours in exasperation….

  12. ME has been around at least since the 1930’s. The politics surrounding ME, the numbers of people involved, the requests for more research, changing of the diagnostic criteria and possibly ignoring the spread of a infectious retrovirus means that this IS the biggest medical scandal of our generation.
    And we’re supposed to be grateful for some money that is not guaranteed to help us! The trial cohorts will probably not be chosen from the severe patients and might not have genuine ME is the Canadian Criteria is not used. Also, the trials might not be psychological but they could focus on fatigue and sleep disorders. They will probably focus on the theory of deconditioning and then the experts (?) can say,”Look ME is physical but it is caused by deconditioning and all you have to do is GET.” And round and round we go again.
    We have had enough of those sort of trials. I’ll await the results of the good guys in the US who are looking into XMRV and the immune system abnormalities. I gave up on the UK a long time ago.

  13. JT, the MRC isn’t part of the DoH. My understanding is that it’s an independent body funded by the department for Business, Innovation & Skills, run independently of ministers.

    That said clearly if the politicians more fully understand that a) we’re not providing treatment to 250k people with a serious illness and b) there’s a retrovirus infecting more people than HIV that we know v little about, I am sure the MRC can be “encouraged” to do the right thing. I don’t know whether the DoH ever funds research itself.

    I’m angry and frustrated things move slowly but at the same time enormously appreciate of the hard work done by many to move us forward.

    Fingers crossed for Ian Swales’ debate on the 2nd Feb.

    1. I have fingers and toes crossed Olliec.

      I have yet to learn if the Debate will be televised although I understand that the Politics Show will be doing a feature.

      When exactly I know yet not. Will update when I find out more.

      I share your anger and frustration as well as cautious optimism as I believe do the MEA and other sufferers who do not post comments here.

  14. The MRC is independent of the Department of Health, but who do they get their funding from.

    As Professor Hooper has said in regards to the PACE trail, “…why were participants to be questioned about their financial situation and asked about what State benefits they were receiving, including being questioned to ascertain if they were expecting to receive any payment from any insurance policy, with their answers being recorded? Such detailed probing into participants’ financial situation is highly unusual in a clinical trial and is possibly illegal.”

    and

    “Nowhere in your letter is there an acknowledgement of the WHO ICD classification since 1969 of ME/CFS as a neurological disorder, a disorder that was recognised as organic by the Royal Society of Medicine in 1978 and by the Department of Health in 1987, and a disorder which in 2002 the Chief Medical Officer said should be set alongside multiple sclerosis,MS, and motor neurone disease, MND.”
    (26th January 2011)

    What is the MRC doing about ME, as opposed to chronic fatigue?

  15. And the relevance of your quotes is what exactly given the title and context of this News?

    You know my own feelings about attempts to seperate at this stage your own prefered label ME from my label CFS – so I won’t even entertain that one any further.

    1. You don’t know why I have posted something, but you will misinterpret it. Makes no sense!

      I believe in definition not labels.

      These are the actions of the MRC. What does that tell you? It tells me to wait and see, not assume nor be naive.

  16. Dr Charles Shepherd

    The bottom line to research into ME/CFS is that we are not going to definitely confirm the organic/physical basis to the illness, and remove the medical scepticism, unless we can demonstrate a clear link between key symptoms – eg exercise-induced fatigue, cognitive dysfunction, pain, orthostatic intolerance – and consistent pathological and/or physiological abnormalities.

    At the same time if we can link key symptoms to pathological and/or physiological abnormalities this will open up a route for drug treatments that are aimed at the underlying disease process.

    I suspect that I may be banging my head against a brick wall here when it comes to all the negative feedback about the MRC announcement. But do those who do not support this MRC initiative on research priorities and funding think it would have been better if we had never set up this Expert Group?

    I have not had any input into the timing of the MRC announcement but have been making it clear that the delay was becoming unacceptable. It may be that the timing of the House of Commons Adjournment Debate on Wednesday has had an effect. The MEA is, incidentally, assisting Ian Swales MP with this debate and I hope to be at the House of Commons on Wednesday. The debate, which will last 30 minutes, is also attracting media attention. Details about the time (currently betwen 4p and 4.30pm) and TV access will appear on the MEA website.

    Dr Charles Shepherd
    Hon Medical Adviser, MEA

    1. Dr Shepherd, I would have hoped by now you would see this is not about being negative. Should we trust that the money will be spent on the type of research you mentioned? I would dearly hope so. Yet the same MRC has thrown out the PACE trail complaint! These two events are totally at odds with each other. I desperately want to believe, but only their actions through where this funding is allocated will be proof that their attitude having changed.

  17. Dr Charles Shepherd

    The MEA has made its continuing opposition to the PACE trial very clear. You may recall that we organised a petition when it was first announced.

    The MRC Expert Group has not been involved in the PACE trial, or compaints about it that were sent to the MRC.

    Our remit was to review the current research findings/literature, bring in new researchers who have not necessarily been involved with the subject in the past (hence the invite list to the research workshops), prepare a list of short, medium and long term biomedical research priorities, and try to secure some funding. I believe we have achieved these objectives.

    The PACE trial is now complete and the results are awaiting publication. Nothing will stop the process at this very late stage.

    So the most important work in progress must be to decide how to respond to the results once they are published and then consider what effect they will have on a review of the NICE guideline – if this takes place in 2011.

    CS

    1. Dr Shepherd you are confusing the feelings people have about the MRC with those for the MEA. They are not the same. I know what the MEA has done about the PACE trail and in trying to get the MRC to fund robust biomedical research into ME.

      The complaint should have stopped the PACE trial from ever being published. It is a scandal that it has been dismissed. It makes no difference what they say once published, as it has been clearly shown to be flawed and not relevant to ME. It should have no influence over the NICE guidelines, and the NICE guidelines should be scrapped considering that the MRC have stated that”

      “there was a lack of high quality evidence to inform treatment of CFS/ME and in particular on the need to evaluate treatments that were already in use and for which there was insufficiently strong evidence from random controlled trials of their effectiveness”. (Dr Frances Rawle, Head of Corporate Governance and Policy, MRC, Rejection of PACE Trial complaint)

      You state that the expert group is not involved in the PACE trial complaint. That is not really correct. Peter White of the expert group is the principal investigator of the PACE trial. Other members also hold incongruent ideological opinions on this type of research, and have voiced their uneducated beliefs about MRV research, when not in possession of the full facts nor qualified to comment on virology research.

      Or are you saying that the MRC is split over it’s opinion of what ME is? The PACE trial is not based on a thorough knowledge of the existing scientific literature regarding this disease, and is about the symptom chronic fatigue.

  18. I don’t wish to rain on anyone’s parade or add to the feeling of negativity, but I have to admit to also feeling underwhelmed by the £1.5 million that the MRC is bestowing on us. I do appreciate Dr Shepherd’s comments – and his hard work – that getting the MRC to budge an inch is like moving an oil tanker around, and this, of course, *is* a step in the right direction.

    But it really is very hard *not* to be cynical in light of what has gone before. People with ME are not dancing bears, we should not be salivating and grateful because we have been handed some coins on a saucer. How do we know Esther Crawley won’t get some money to study ‘sleep hygiene’ – once she has finished ‘talking’ to the children? And that she doesn’t conclude hot milk and lavender pillows will help us sleep better?

    I have a letter from my MP from late 2007, in which he assured me – via another letter from the then health minister Alan Johnson – that the ‘MRC always welcomes high quality applications into any aspect of health’ and ‘awards are made according to their scientific quality’. He mentioned the ongoing importance of the PACE trials(!) as ‘some people had been helped’, though some had ‘reported worsening of symptoms when these treatments had been applied outside of research settings’.

    So this was the Health Minister’s understanding of ME, and he believed he was reassuring a constituent with ME of the integrity of the MRC re. biomedical research.

    I really hope I am proved wrong and that this money *is* spent on meaningful research for people who have ME. Right now, it seems little more than a political token gesture. The MRC has to actually prove itself before we can give it any real credit. I will be the first to clap my hands if this money contributes to our understanding of the illness.

  19. Dr Charles Shepherd

    A few quick points on the further comments being made:

    1 NICE will be taking very serious note of the results of the PACE trial when they are published – probably fairly shortly. If the results for CBT and/or GET are positive, this will help to strengthen their recommendations regarding CBT and GET in the current (2007) ME/CFS guideline. If not, and pacing does well, then some modification to their recommendations on activity management will have to be made. Fact of life….

    2 The remit for the MRC Expert Group was to consider the results of published research on ME/CFS – hence the vast literature search; consultation and workshops with researchers not currently working in the area of ME/CFS – whom we are keen to get involved; and the subsequent development a list of biomedical research priorities – which are listed in full in the minutes of the prioritisation meeting. We have not been considering or discussing the complaints about the PACE trial, or the progress of the PACE trial. This is an internal matter for the MRC.

    3 The MRC Expert Group was not involved in advising the MRC on how they should define ME. Again, this was not part of our remit. We were working on the basis that we were dealing with a heterogeneous range of clinical presentations (and probably pathological explanations as well) that currently come under the ME/CFS umbrella.

    4 The MRC Expert Group is clearly hoping that this announcement will bring in new researchers (and new research ideas/technologies) into the area of ME/CFS – who have previously been put off because the believe that the MRC is not interested in funding biomedical research. One indication that this may already be happening is that I was in discussion with a well respected research group last Friday, who have no previous involvement with ME/CFS research, and who have a very exciting biomedical research proposal that the MEA Ramsay Research Fund cannot currently fund right now because of the cost. Hopefully, this proposal will shortly be on its way to the MRC……

    Once again I feel that this is a very significant step in the right direction at the MRC and I hope that they will now receive some top quality biomedical research applications. It is now up to the research community to respond – the offer is clearly there and will receive further publicity in due course.

    The way the initiative proceeds will obviously have to be monitored very closely, especially the peer review process, but it would be helpful if just a few people could actually welcome what Professor Holgate and the group has done – rather than simply pass on a very negative message to the MRC that it has all been a waste of our time. .

    Dr Charles Shepherd
    Hon Medical Adviser, MEA

  20. Again, you are assuming that people are not welcoming the 1.5 million if it goes on robust biomedical research. It is unhelpful to argue that this is the case. People are concerned that the money will not go where it should, and perhaps to those it always has. Will this funding be spent in the next 12 months, or be spun out over 10 years? Will they continue to put 1.5 million into ME/CFS every year? It is needed. These are important points, and should not in any way be ignored.

    The rest of this post is on the PACE trial.

    PACE will not strengthen anything, as the study is flawed. Therefore the MRC are merely pushing an ideological position. That’s a fact of life the MRC and NICE need to get used to.

    It is ironic that you mention ‘the vast literature search’ that the expert group has undertaken, as the PACE trial did no such thing.

    The complaint about the PACE trial, although in essence separate from the expert group, if you ignore the involment of Peter White, is not just an internal MRC matter. But I’m sure you know that. BIS are also involved.

    The umbrealla of “CFS/ME” through creation of the NICE guidlines is hetrogeneous, but is ME/CFS?

    Is it not the case that reserachers who were interested in ME/CFS were not put off “because the believe that the MRC is not interested in funding biomedical research”, but because the MRC claims their proposals were not of a high enough quality?

    1. christine standing

      I think there should be a legal challenge to the Nice Guidelines if they are not in keeping with the WHO definition. We, the UK, have a legal obligation here.

    2. JT, I totally agree with all of the points that you have made above.

      Dr. Shepherd, you continue to disappoint.

  21. Let’s wait and see what happens. I am cynical as corruption is rife and economics takes precadence over morally doing the right thing.

    So the diagnostic criteria is not ‘in the remit’. Well, excuse me for being cynical then.

    ME is a priority. Other illnesses are already accepted and have a strict diagnostic criteria and good public perception, even those that we still don’t know the aetiology of so I’d like to see the MRC taking the patients views into account otherwise we will be in a similar situation.

    My fear is that the research will focus on the biomedical (to appease certain key people) but it will be to uphold the theory that people with ME are deconditioned and so have ‘no underlying disease process’. This was part of my treatment (?!) under the NHS and the manager of the clinic agreed that it didn’t apply to me, I was one of the subtypes (yes, I have genuine ME) and referred me to the consultant who diagnosed me with mitochondrial dysfunction as part of my CFS and so GET was not to be used. He disagreed strongly with the deconditioning theory.

    I’ll leave you with the statement issued by Invest in ME on the MRC announcement;

    http://www.investinme.org/IIME%20Statement%202011-01-01.htm

    ‘Let us hope that “the research into mechanisms of CFS/ME” (which more appropriately ought to be termed “research into the biomedical mechanisms of ME/CFS”) will involve pure biomedical research using the proper diagnostic and research criteria and that new and innovative proposals based on a wider strategy of biomedical research are allowed to be considered properly. Failure to do so will nullify any subsequent research which is given funding.’
    Amen to that.

  22. Dr Charles Shepherd

    In response to the queries:

    A more detailed MRC announcement will obviously follow but my understanding is that the £1.5 million is not time limited – it all depends on whether researchers follow up the offer, the quality of the applications that come in, and whether they are relevant to the research priorities that have been listed.

    The £1.5 million is ring-fenced to this initiative and once that money has been used up there is, of course, nothing to stop researchers applying for more funds from the MRC pot.

    I do not know if the MRC intends to repeat the offer if/once the £1.5 million has been used.

    Regarding mitochondrial dysfunction:

    As someone who has been personally involved in research in this area with both Prof George Radda at Oxford and Professors Mina & Peter Behan at Glasgow, and helped to produce the first study demonstrating clear evidence of abnormal muscle energy metabolism in ME/CFS, I was very keen to see mitochondrial function included in the MRC list. If you look at the minutes of the prioritisation meeting you will see that mitochondrial function – which is very biomedical – appears in our list of medium term priorities. As you are probably aware, the MEA Ramsay Research Fund has been funding a further study into muscle abnormalities at the University of Newcastle. This study is complete and results are now being prepared for publication. More info can be found in the research section of the MEA January Board of Trusees summary on this website.

    Charles Shepherd

    1. Dr Shepherd why has no definition been agreed upon? What use will this be if people continue to use the Oxford criteria, which does not apply to those with ME/CFS, or even the NICE guidelines, Fukuda, or Empiric definition?

  23. Thanks, Dr Shepherd. I have been previously discouraged by mention of mitochondria in the Pragmatic Rehabilitation Programme given to me at a NHS CFS/ME clinic. It talks of less mitochondria in those with CFS due to deconditioning and not evidence of abnormal muscle energy metabolism so I look forward to the published results of the Behan study. Will this prove that patients with ME/CFS have muscle disease? Whether this will lead on to further research into the cause i.e. damage by a virus and a diagnostic test (oh, if only) remains to be seen. We have had lots of good published studies but not much of it has been used to improve the view and testing of patients with ME.

  24. Dr Charles Shepherd

    The muscle function research that the MEA Ramsay Research Fund is currently funding is being carried out by Professor Julia Newton et al (see below).

    The is now plenty of robust evidence to discredit the decondioning theory – relevant research papers are summarised in the 2011 edition of the MEA purple booklet.

    MEA BoT January meeting website summary:

    Professor Julia Newton et al, University of Newcastle

    CS reported that work has proceeding according to plan during 2010 and assessments have been performed on 25 subjects who have been recruited via the Northern Regional ME/CFS Clinical Service. The assessment procedures included testing autonomic nervous system function, muscle performance, exercise physiology protocol, and body composition (ie the amount of fat and muscle present). The second phase of the study involved the use of magnetic resonance spectroscopy to assess the way in which muscle is producing energy and lactic acid during exercise. The results are now being analysed and prepared for publication.

    Further information on this study can be found in the August 2009 issue of ME Essential magazine.

    RRF funding = approximately £13,800.

    Newcastle University Fatigue Research Symposium:

    CS met Professor Newton at a research meeting that was held at the University of Newcastle last year. There were presentations from Professor Newton and colleagues on muscle and autonomic dysfunction research involving people with ME/CFS. The meeting focussed on muscle research and considered the role of fatigue in other medical conditions such as HIV and other infections, mitochondrial myopathies, primary biliary cirrhosis and Sjogren’s syndrome. The session on HIV and fatigue covered the important issue of muscle mitochondrial damage following antiretroviral therapy (AZT) – something that is obviously going to be very relevant if it turns out that XMRV or MLV is a causative factor in ME/CFS and clinical trials involving antiretroviral therapy take place. A summary of the Newcastle meeting is available in the July issue of ME Essential magazine and on the MEA website: https://meassociation.org.uk/?p=975

    An abstract from a recent research paper from Professor Newton’s research group, which relates to an investigation into cardiac (heart) and skeletal muscle (= muscle that moves bones) can be found on the MEA website. An abstract from another recent study from this research group, relating to abnormalities in pH (ie acid) handling by skeletal muscle, can be found here: http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2009.02160.x/abstract

    Dr Charles Shepherd

  25. Prof Behan gave me muscle biopsies and muscle function tests in eighties and declared me to have a ‘houseful of abnormalities’. Will be great if MRC focuses more on issues like mitochondrial dysfunction and less on sleep disorders! I guess we just have to remain optimistic and pray the funding is allocated with integrity and foresight.

  26. The quick survey that is up for this MRC 1.5 million does not have enough options.

    I am not happy about the small sum of money, nor happy that there is no timescale on when this will be spent, nor that it might not go on biomedical research.

    Can an option be added for:

    No – No guantee it will go on biomedical reserach, and too little funding.

  27. Dr. Shepherd said
    “3 The MRC Expert Group was not involved in advising the MRC on how they should define ME. Again, this was not part of our remit. We were working on the basis that we were dealing with a heterogeneous range of clinical presentations (and probably pathological explanations as well) that currently come under the ME/CFS umbrella.”

    The point is, if you want to understand trout, say, you need to recognise a trout. It will be no good if your definition of a trout is a creature that swims in either salt or fresh water, because that definition will included eels and salmon, which are different fish with different life-cycles. So you need a definition that includes things that when combined are exclusive to trout – say rainbow colouring (includes dragonflies, but they don’t swim in the sea) and a certain size range (which other fish have but they aren’t rainbow coloured)

    And there’s the problem. How can you study a heterogeneous range of presentations and come up with any treatments that makes sense? As long as the definitions used are woolly, the cohort confused, they will still be studying chalk and cheese.

    In order to study Myalgic Encephalomyelitis aka CFS, the disease needs to be defined accurately. This is possible, using the Canadian Consensus, or even the Ramsay definitions, but while the smoke and mirrors created by phony definitions from the Wessely group and the CDC continue to create a heterogeneous cohort, there is no chance of the money actually doing anything useful.

  28. christine standing

    OK Dr. Shepherd,

    I understand your argument for the need for an accurate definition and to clear away the woolly-Wessely rubbish . JT also asked ‘why has no definition been agreed upon?’ I understand the scientific argument. What I don’t understand is why the WHO-G93.3 isn’t the starting point. This is a legal instrument that is ratified by the UK.

    Conversely, I don’t understand why there hasn’t been a legal challenge to the woolly-wessley camp on this basis.

    Do we not have any pro-bono legal types around?

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