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UK parliamentary meeting (APPG on ME). The MRC's attitude seems hopeful.

Discussion in 'General ME/CFS News' started by Bob, Mar 2, 2012.

  1. oceanblue

    oceanblue Senior Member

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    Stephen Holgate was pretty clear when the funding was announced that it wasn't enough but was a start. I don't think he'll be waiting 2-4 years for something to happen - I got the impression he'll be trying to get more studies funded.

    Wildcat: I'm familiar with the MRC's funding history (they once head a Head who believed 'the only approach that works with CFS is behavioural') and they have never before ring-fenced funds for biomedical research into CFS. That is real change, albeit not as much as we like. I think we need to encourage those like Stephen Holgate - and Charles Shepherd - who have been working very hard to get this funding. If all we can say is 'is that it?', they are hardly going to be encouraged to keep trying.
  2. Wildcat

    Wildcat Senior Member

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    oceanblue - those who heared Professor Holgate speak in 2008 were clear that either he was ignorant/oblivious of ME politics (in which case he would be no help to us) or was aware of ME politics (in which case he was fudging).., Professor Holgate promised us the moon and stars, it was really not believable at the time. Informed patients were rightly sceptical. Since then Prof Holgate has bought into the mendatious/deceptive propaganda that the reason researchers are not interested in ME research was because of supposed "attacks" by patients. It is appalling that Prof Holgate was fed that story and believed it.


    I witnessed the most appalling verbal attacks against ME patients by officials at an official meeting - actual verbal violence. A significant number of official Complaints were made to the Parliamentary Commissioner for Standards in Public Life about the disgraceful verbal onslaught against the patients at that specific incident.

    Afterwards the propaganda about 'disruptive patients' was intensified even further.

    Its not the patients who are putting off the researchers, but the malicious propaganda instigated by Wessely et all, disgracefully reinforced and repeated by Shepherd and Spencer and damagingly repeated by Professor Holgate.


    As for the 'postcode lottery', that decepetive meme has been spread around until its become a virtual slogan -

    The APPG NHS Services Inquiry of 2009 totally supported the status quo and ignored the vast quantity of evidence from patients that the so called 'specialist services' are either a waste of space or actually damaging. It was the APPG Inquiry Committee who gave a specific platform to the Lightning Process at the APPG NHS Services Inquiry!!
  3. Bob

    Bob

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    I don't think that any of us are under the impression that everything is rosy, Wildcat.
    The MRC funding isn't nearly enough to make a difference. The funding should be in the region of 100's of millions to make a difference to our lives.

    But Steven Holgate did promise us some ring-fenced biomedical research funding for ME, and he's delivered some proper biomedical research, even if they're not absolutely perfect studies.

    They've said that they will continue to fund ME research, and based on their recent actions, it seems that's what they mean.
    Maybe I'm being naive and overly optimistic, but I'm just judging the situation by what I've witnessed.
    This situation seems like a transformation from the total lack of funding over the past few years, and the funding of the PACE Trial.

    And I don't think what they are currently saying is a scam... They've done exactly what they said they would do...
    And they seem to understand what needs to be done when they say:
    "Work is now being done to establish the pathogenesis, disease pathways and biomarkers of M.E."
    That's not a case of fobbing us off with psycho-babble or double-meanings, although I do agree that everything is not perfect.

    A couple of odd things were said, such as about the NICE guidelines, but the most important thing is that they are funding appropriate research, although not all the funded research is what we want and need.

    I'm in no doubt the these establishment people don't really understand the world of ME, and they often have twisted views about ME and ME patients.
    But the most important thing with the MRC is that they are funding biomedical research.
  4. Wildcat

    Wildcat Senior Member

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    Professor Holgate promised us the moon and the stars in 2008 - do you REALLY think that the research that has been funded will really advance understanding, treatment and cure for ME? We can't survive on hope you know.

    As I said - it would be advantageous for ME campaigners to familiarise themselves with the rhetoric, fudge and double speak re MRC and Research over the last decades - to recognise how we are still being led down the garden path.

    As I said, I don't have another decade to wait and witness ME patients falling for the sweetalk, only to come to their senses and wake up when 3/5/10 years have passed with no progress - we have seen it all before.
    Bob likes this.
  5. Wildcat

    Wildcat Senior Member

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    So why, 8 years after the CCC was developed, and now we have the ICC - why are these criteria not used for diagnosis or research? Why have neither of the two main 'ME' charities lobbied for their use?

    Heterogenouos CFS is the road to endless fudging - fatigue of 6 months and fatigue plus 2/4 symptoms does not define ME. What are our so called charities doing about it beyond maintaining the status quo?... and keeping their membership numbers up (pathetically) by keeping a broad fatigue definition...and alienating, (even going as far as vilifying), Myalgic Encephalomyelitis sufferers.
  6. Wildcat

    Wildcat Senior Member

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    .
    oceanblue wrote: "Stephen Holgate was pretty clear when the funding was announced that it wasn't enough but was a start."



    The Royal Free disease outbreak was 57 years ago - the CMO's working Group was instigated 14 years ago - we have been calling for *relevent* bioresearch for decades - as an informed and experienced activist put it -the being *grateful grateful* for crumbs mentality will get us no where.
  7. Bob

    Bob

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    If we didn't have research going on in the USA, then I would be very frustrated, but I've never expected any change to happen in the UK, so it's a relief for me that at least things seem to be moving in the right direction in some areas.

    The UK research isn't going to change our lives, but at least it is proper biomedical research, albeit on a very small scale.
    They've even funded research into Rituximab, and that's a long way away from psychotherapy.

    Like I said, any research developments are going to come from the USA and Europe anyway.
    I gave up on the UK making any research discoveries years ago.
    All I can hope for over here is that ME is taken seriously, and acknowledged for what it is, and that patients are treated fairly and validated. I know we are a long way from that, but this thread is purely talking about MRC funding.

    Good points, but we've only been talking about MRC research funding in this thread, and how it seems to be moving in the right direction - nothing else.

    I've said that I am 'hopeful' for change, and others have said that it might be beneficial to 'encourage' change. This isn't the same as being 'grateful for crumbs'.

    Why are you assuming that none of us know the history of ME, and that none of us do anything to get things changed?


    ETA: Oh, I did say that I was grateful for crumbs didn't I! But, it was just a turn of phrase. It means I do appreciate it when I see things getting better. But I do agree that the pressure on the athorities needs to be maintained, and that there isn't anything much to be grateful for.
  8. Wildcat

    Wildcat Senior Member

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    I was quoting an experienced and informed activist who pointed out that the "grateful grateful" response is not in our interests...

    frankly I've had enough of actvism - having seen behaviour from 'activist attackers' that is beyond the pale, and compulsive complacency that does not save lives - and even denial that lives are even lost ....I spent two years reading evidence before engaging in campaigning or giving my 'opinion'. But now I am totally exhausted with bringing historical evidence to my fellow sufferers attention - so we can identify how and where we are being deceived.....

    I don't think that activism is about having nice debates - but about saving lives - and to do that one has to be not only informed but to place the information in context.... and falling for the latest double speak from the MRC is not helping us
  9. Esther12

    Esther12 Senior Member

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    If money's going to go on being dumped in to psychosocial work, we should at least get it to investigate areas that concern patients.

    eg: Are those doctors who view CFS as being the result of deconditioning more likely to hold negative assessments of CFS patients? How does this affect their patients emotional well being? Does a willingness to assume unexplained physical symptoms are the result of psychological problems predict a breakdown in doctor-patient relationships? Are social groups which assume CFS to be a result of deconditioning less supportive than others?

    I don't think think that we're going to see significant changes in the way CFS patients are treated unless there's a major scientific breakthrough, or politicians decide to get involved and emphasise the innately moral and political aspects of the controversies around CFS. Neither look likely.

    I think that we have seen gradual improvements over the last decade, but I don't think that's much to be grateful for. The tolerance of manipulation and spin in the way the results from PACE were presented has made me think that things could be moving backwards again anyway.
    Wildcat likes this.
  10. Wildcat

    Wildcat Senior Member

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    Well said Esther! Despite the fact that I frequently disagree with you, you have made very pertinent points here.
  11. Bob

    Bob

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    Well it might be more productive to enlighten us all with your superior knowledge about the history of ME. I'm sure you've got a receptive (if 'complacent') audience here.

    I understand your anger and frustration Wildcat, and I share your frustration.
    But you shouldn't assume, from a narrow discussion like this, that people don't understand the facts, and that we don't do anything to get things changed.

    But even if we didn't understand the facts, then it would surely be more productive to inform us than to rant at us, and boast about how well informed you are.

    If you used this forum much, and knew us, then you would know that many of us take an active interest in ME, and ME advocacy.
    But different people have different approaches, and different ways of doing things.



    I haven't seen much double-speak from the MRC about this round of biomedical research funding, apart from them praising the NICE guidelines, and the sleep study, and I acknowledge your point about the diagnostic criteria. (Which diagnostic criteria are they using for all the new research by the way?)
    So it would be helpful if you could demonstrate what you mean if you have the time and energy.
  12. currer

    currer Senior Member

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    I am concerned about the statement about the "gulf in quality" between the research proposals accepted and rejected.

    Until we know WHAT research proposals were considered so bad they had to be rejected, how can we take such a statement on trust?
    I was very disappointed in the research funded (and promoted with so much self-congratulatory rhetoric) this year.
    It is likely they were sent much better research proposals, ones that wanted to look at obvious disease biomarkers such as immune parameters, for instance, especially as interest in this area of research was highlighted by the Mikovits research work in the US.

    So how can we know that the research that was rejected really was as bad as they claim? How can we be sure this is not just rhetoric? How can we find out what research proposals were sent in and why they were rejected? I would rather judge for myself.
    Wildcat likes this.
  13. Wildcat

    Wildcat Senior Member

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    Its not superior knowledge, Bob - just time and trouble (and precious energy) to read APPG minutes and Transcripts, MRC documents, Inquiry Transcripts etc - I have been putting these online with analysis for years, but am at the end of doing so, as I don't see why people such as you cannot do it for yourselves.
  14. Bob

    Bob

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    But the whole point about this thread is that the MRC are now funding biomedical research.
    There wasn't any psychosocial research in the latest funding round, was there?
  15. Bob

    Bob

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    Very constructive, and informative, thank you Wildcat.


    I wonder if you could you help me with the following please?:

    Do you happen to know which criteria they are using in all of the latest MRC-funded studies?

    And how has the MRC not lived up to it's promises with this latest research funding round?
  16. Wildcat

    Wildcat Senior Member

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    Lets meet up in a decade and see how far ME patients have got - eh?
  17. Bob

    Bob

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    I don't know if any info about the rejected studies is publicly available.
    It might be worth looking on the MRC website.
    If not, you might be able to get the info via a request or a FOI request.
    (FOI requests are extremelly easy to create - Let me know if you ever need any help with one.)

    There is a study that looks at the immune system, although I haven't seen the details...

    Identifying the biological fingerprints of fatigue
    Principal investigator: Dr Wan Ng
    Institution: Newcastle University
    Summary: Researchers will analyse the immune systems of more than 500 patients with primary Sjgren syndrome a chronic condition with similar symptoms to CFS/ME, including intense fatigue. Scientists will look for immune system abnormalities in these patients to help them identify the biological fingerprints of fatigue. It is hoped this will improve their understanding of the mechanisms of fatigue with a view to developing new treatments. It also offers the hope of a clinical test for the diagnosis of CFS/ME.


    And there's one that looks at mitochondria function...

    Modulation of aberrant mitochondrial function and cytokine production in skeletal muscle of patients with CFS by supplementary polyphenols
    Principal investigator: Professor Anne McArdle
    Institution: University of Liverpool (joint with the University of Leeds )
    Summary: Scientists will use a newly-developed technique to study the energy-generating components of muscle cells (mitochondria). Some studies have suggested that mitochondria may be dysfunctional in CFS/ME, leading to an energy deficit. The scientists hope this will help them learn more about how CFS/ME develops and becomes a chronic condition.


    They seem quite helpful to me, although the other 3 studies look pretty useless.
  18. Esther12

    Esther12 Senior Member

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    Not of the ones announced as part of their 'new blood' funding - I had assumed (perhaps wrongly) that there were also other projects receiving funding, just because their seems to be a constant stream of poorly done and misleading psychosocial studies (although admittedly, they normally seem cheaply done).

    I had just come back to edit my post and tone it down a bit - I've been rushed doing ESA forms as part of the sophisticated biopsychosocial reforms to disability recently, and it's left me in a bad mood. Sorry for going OT with a vent... I need a voodoo doll to chuck around instead of trolling threads!

    The way in which the PACE results were spun, and patient's concerns about this manipulation were treated, has left me feeling pretty hopeless about the British medical establishments approach to CFS and patients with the diagnosis. There doesn't seem to be any sense of moral imperative, and without that, we're just hoping for a scientific breakthrough to improve the way that patients are treated. It does seem like there's been improvements to the MRC's approach to CFS... but 'CFS' is such a difficult diagnosis to study that I'm far from confident that even a sensible approach to research will lead to rapid major advances.

    I think that I have also 'banked' the recent improvement from the MRC, and therefore didn't see anything particularly positive in these minutes... but I am tired and in a bad mood, so I could well have missed something.

    Things like that do piss me off. I couldn't care less whether some quacks think they're helping by lumping all CFS patients together and treating them as if they all suffer from an unreasonable fear of exercise - unless there's compelling evidence that all CFS patients do suffer from an unreasonable fear of exercise, then those promoting this approach should be attacked. I don't think that the CFS 'community' should feel positive about the way CFS and patients with the diagnosis have been treated, and if that seems ungrateful to Professor Savill then this just shows how little he has thought about these matters.

    Esther Crawly's dishonest claim that PACE showed a 30-40% recovery rate for the treatments which she is paid to provide means that she should be attacked. etc, etc.

    Anyone who looks at the issues and complexities around CFS, and decides that the reason there is a poor relationship between some researchers and patients is that patients have not been positive enough about the work of these researchers is a...

    that I'm incessantly drawn towards swear words shows that I'm still in a poor mood.

    It seems that you prefer me when I'm in a bad mood!
    Wildcat likes this.
  19. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    *Silverblade putson his John Clease Mode*

    What has the British Medical Establishment Done For us?

    They gave us...weasels!

    Yes yes, ok, all right, they gave us the Weasel
    What else have they given us?


    A f** pain in the arse!

    Sigh, all right, apart from, the Weasel and a pain in the...ahem, arse, what have the British Medical Establishment given us?

    Graded Exercise Torture! Them bloody crosses and barbed wire bunnets are a RIGHT swine, I can tell you!

    Grrr, ok, ok, apart from...Weasels, a pain in the posterior and graded exercise thingy...what has the british medical Establishment ever done for us, hm?


    ....

    ......


    *crickets chirp*

    Yes, yes, ok, you're right, they're a bunch of useless old git b*stards!
    Well, now we've got that sorted out....right lads, off to the pub then?



    :p


    the scene from Monty Python for those who've never seen it, hehe

    [video=youtube;ExWfh6sGyso]http://www.youtube.com/watch?v=ExWfh6sGyso[/video]
    Wildcat likes this.
  20. Bob

    Bob

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    Don't worry Esther... It's always nice to see you, bad mood or otherwise!

    Sorry to hear you having a bad time with ESA forms.

    Make sure you get a Weasle voodoo doll!


    I know exactly where you are coming from Esther, but my hope is that the PACE Trial was a turning point. I saw the entire ME community get so angry about the PACE Trial, with one single voice of condemnation, that I think we made waves. And I don't think it can get any worse than the PACE Trial. I think the authorities will now have to move on from the psycho-babble research, and I think we made people sit up and take notice of us. But maybe I'm being too optimistic, as I often am.

    But like I said earlier, I don't rely on the UK, and I look abroad for research developments. There's no point in waiting for the UK to change. It seems that the most we can do it fight the consequences of the PACE trial for now, and wait until the next NICE review.

    Honestly, it was just a relief to see the MRC talking about ME as if it is a real illness. That gives me some small hope that there might be other changes along the line. I don't know why this thread got so heated.
    Enid likes this.

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