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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. Bob

    Bob

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    Enid and fla like this.
  2. Enid

    Enid Senior Member

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    Great news Bob - so long overdue (how many years since the Royal Free says it all)
     
  3. currer

    currer Senior Member

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    Sorry to say this, but I cannot see any real difference!

    It has been going on like this for years!

    Nice clinical guideline 53 is rather backward, all about GET and CBT, I dont see how that could have "changed the landscape".
    I remember the previous guideline as being more progressive.
    And the new research is hardly groundbreaking. Why do they try to present it to us as if it is. It makes me suspicious. Sorry to take this attitude, Bob. If anyone can tell me why there has been a "change" Id be glad to be proved wrong.

    I dont follow this work anymore, I became demoralised with it ten years ago. So if anyone wants to explain the details to me and show me that I am wriong, Id be more than happy to listen.
    I remember the previous CMOs report, which was much more groundbreaking, which my then consultant had a major role in producing, and that progress was promptly reversed with the present stuff. I think I have a copy of the old CMO report in my loft.

    To hear AfME talk you would think it a story of unbroken progress. No. We are going round in a circle.
     
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  4. Wildcat

    Wildcat Senior Member

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    Well, these Minutes show yet more of the rhetoric that we have become so familiar with over the decades.

    About 5/6 years ago the then Health Minister Andy Burnham told an APPG meeting that NICE will change the landscape of how CFS is perceived.

    Now Professor Saville states that the landscape has been changed as a result of NICE, and that he has not read the [proposed MRC Studies] studies in detail.



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    Looks like we will be stuck with the fossilised mammoth of the NICE Guidelines for years to come.

    The weight of evidence against the NICE Guidelines is very substantial. All but two of the ME patient representation charities (AFME and AYME) officially rejected the NICE Guidelines as Unfit For Purpose, with solid evidence-based reasons.

    Over twenty renowned ME/CFS experts provided Statements to the Court (Judicial Review of the NICE Guidelines) challenging the validity of the research that NICE used for its Clinical Guidelines. NICE relied on a handful of low quality Randomised Controlled Trials that were methodologically flawed. The UK NICE Guidelines recommend only two treatments, CBT/GET (Graded Exercise).



    One of the main criticisms of the NICE Guidelines is that the research it relied on was done on people selected by the UK Oxford criteria that can easily select people with primary depression and anxiety, but does not define or diagnose ME.
    NB GDG means Guideline Development Group, ie those who formulated the NICE Guidelines.



    Dr Irving Spur spelled it out: I have no doubt that patients in the research quoted by the [NICE] GDG did not have ME/CFS (Dr Irving Spurr, Newcastle ME Research Group; 12th August 2008).

    The GDG has placed undue reliance upon a small number of RCTs that were methodologically flawed because they did not adequately define the patient population (Dr Terry Mitchell, formerly Consultant Clinical Lead (CNCC) of the Norfolk, Suffolk & Cambridgeshire NHS ME/CFS Service, 23rd June 2008)



    The predominance of psychologists / psychiatrists on the GDG is entirely inappropriate and has led to a biased analysis in my opinion. The GDG has placed undue emphasis on a few UK clinical trials however, these studies did not properly or adequately define their patient population
    (Dr Jonathan Kerr, Hon. Consultant in Microbiology; Consultant Senior Lecturer in Inflammation; Principal Investigator of the CFS Group, St Georges University of London, 11th August 2008)



    You will see from my attached treatise that I consider that the recommendation of CBT and GET as blanket treatments of clinically excellent first choice is extremely dangerous to patients. I am concerned that NICE claims that an adequate evidence base supports CBT/GET, when in fact the Guideline Development Group (GDG) relied almost exclusively on a handful of extremely controversial RCTs (random controlled trials). I have no doubt that patients in the research quoted by the GDG did not have ME/CFS
    (Dr Irving Spurr, Newcastle ME Research Group; 12th August 2008)



    Dr Neil Abbot of ME ResearchUK describes the inadequacy of the research that NICE based its guidelines on:

    only three RCTs of GET with a validity score greater than 10. The total number of available trials is small; patient numbers are relatively low; no trial contains a control intervention adequate to determine specific efficacy, and their results are relatively modest.

    In addition, some of the studies (particularly those on GET) have used the Oxford criteria for diagnosis, a rubric which allows selection of patients with chronic fatigue states and which do not necessarily exclude certain psychiatric disorders, raising the question of the applicability of the results of these studies to the many patients with specific biomedical symptoms and signs consistent with Myalgic Encephalomyelitis.

    Dr Neil Abbot, Director of Operations, ME Research UK; Hon Research Fellow, Department of Medicine, University of Dundee, 29th August 2008)

    See: http://meagenda.wordpress.com/2009/0...-22-july-2009/
     
  5. Bob

    Bob

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    Hi currer,

    I prefer to hear to truth than people agree with me!

    I've 'only' been ill for about 8 years, and when I became ill, all the research was focused solely on psychological interventions, and the establishment view was that ME is a psychological illness, and MRC biomedical research funding was being blocked by psychiatrists, according to Jonathan Kerr. There was no MRC biomedical funding for ME for years.

    So, since then, things have changed at the MRC...
    Although the MRC man didn't want to commit a set amount of funding for ME, it seems that funding will be available to biomedical research projects, including things like Rituximab. Also, he seems to understand that ME is a real illness, as does the head of the MRC who set up this latest round of funding.

    So although the amount invested in the latest research round is chicken feed, things seem more hopeful than when i first got ill.

    I suppose my expectations have been so run down, that i'm grateful for chicken feed!

    It's very helpful to get other perspectives.
     
  6. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    FACT:
    nothing changes in the sh*tty UK system, until catastrophy/whistleblowers or the rare passionate/honest politician strikes!

    This gawd damn country of ours is smothered in blankets of bullshit, of creating a system that has no true accountability, that is 100% dedicated ot keeping the "graavy train" rolling along for the proffessional scumbag
    So all this stuff is BULLSH*T! Posturing, posing, vacous, soporific LIES.

    True change can only happen, and help for us, when the Prime Minster publicly apologizes, when the GMC is swept away (not just the MRC), when many corrupt bastards in the pharma and medical industry are jailed for terrible crimes
    Until then, we will be FUDGEPACKED by this kind of "oh pat the cripple on the head and promise them crap you have no intention of doing because they don't matter a damn, they have no power, wealth or voice loud enough to wake the idiot sheeple"

    Sorry but that is the truth of how it works.
    You cannot change the system within, because all Human organizations corrupt and demand the "group" survives and prospers at ANY cost, even mass murder (look at how religions covered up horrific abuses at dire odds to their principles for proof).
    Britain is arguably, the world's master at duplicity and bullshit, we conquered most of the world with it! :p

    Seven families of bureacrats have been, well not running, but managing the UK since the 1700s.
    I've shown you some of the gross webs of nepotism and incestous (business) relationships

    For some of our "Colonial Cousins" across the Pond not aware of our systems ;)
    This isn't about Left or Right, it's because we've had a very long, powerful history, such always causes gross corruption as things evolve over time.
    Today, the UK and US are at a milestone, like ancient Rome, we are at a pivottal moment like when the EMpire split in two and lost it's "mojo".

    We are one small part of that.
    We, somehow, are a threat to some powerful folk, or they wouldn't have spent os much effort screwing us over.
    Instead of fixing a problem, they BURY them, sometimes literally.
    An accumulation of such crap leads to widespread fracture between populace and government they no longer can abide, never mind trust.
    The government and power elite are so mired in their obssession with keeping things on their even keel without change, the inertia prevents necessary change
    See what has happened in the Middle East lately for what can happen...

    And yes this is about politics, sorry but THIS ISSUE IS ENTIRELY ABOUT POLITICS, POWER AND MONEY, NOT MEDICINE OR SCIENCE!
    sorry for caps but it's serious "Bang head on wall" stuff ;)

    Anyoen who thinks the GMC/MRC etc give a rats' ass for the scientific facts or our suffering is, alas, clueless.
    They'll be having slap-up champagne meals with someone-or-other for keeping us ME patients in limbo, exactly where they want us.

    So, quite hoping for any change or help from these assholes, until it's so bad, so much science or osme catastrophy, that they are forced to change
    until then, they will feed us the Mushroom Treatment
    "Feed 'em sh*t and keep 'em in the dark!"

    see my posts on the Hacking Scandal etc for hard proof of this.

    sorry for such a depressing post, but it's far more like the truth. :/
     
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  7. DaiWelsh

    DaiWelsh

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    Noting the quote in the minutes about a "postcode lottery", that would presumably be the lottery as to whether you get access to useless and potentially damaging "ME/CFS" services, or just no service at all? Not sure which are this week's lucky winners there?
     
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  8. Astrocyte

    Astrocyte

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    Thanks for posting Bob. Looks like more funding would be possible if the quality of proposals is there. And Prof Saville says he has a personal interest as he has a housebound relation with the illness.

    I think you're right, it does sound hopeful. We just need more quality researchers to submit quality proposals!
     
  9. DaiWelsh

    DaiWelsh

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    Yes, that was a key message I took from it also, he said there was a clear gulf in quality between the proposals accepted and rejected and showed reluctance to ring-fence funding. I would read from that that there is unlikely to be more funding unless they get more high quality proposals. Whether that is the correct logic or whether in fact funding needs to come first to draw high quality proposals (as I have heard suggested at CFSAC and elsewhere) I am not sure, but the cynic in me says that the more bio-research averse members of the establishment will have a perfect justification for lack of further funding as things stand - essentially Prof Saville has said that if the pot had been ten times as big, the same projects and no more would have got the nod?

    I was also a little concerned by the comment about being patient, waiting 2-4 years for results. That is fine wrt those studies, but if the implication is that there would be no more funding and/or no effort to stimulate further research until these projects have panned out, that seems quite wrong. Putting aside the marketing mantra I was taught of "never do-wait-do-wait, always do-do-do", the nature/history of this illness surely suggest a high chance that all these projects (with the best will in the world, not wanting to jinx them, touch wood etc.) may turn up empty, so we should be spinning some more plates while we wait to hear back. Maybe I am over-analysing and the comment was just to make it clear the likely lead time on the projects, but the cynic in me is tweaked.
     
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  10. Bob

    Bob

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    Yes, he said that he was impressed with the high quality proposals, and that any new proposals will be funded on their merit. He said that ring-fencing funding for ME would force them to fund bad quality studies, if there weren't enough high quality applications, so they avoid ring-fencing funding for any disease. He also said that any rejected proposals can always reapply.
     
  11. Mark

    Mark Acting CEO

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    That's one thing that jumped out for me too; there doesn't seem to be the radical change in mindset required when people are still talking about how access to 'specialist' ME/CFS services is patchy, when none of those services are well-informed anyway.

    Another thing that does jump out is how fundamentally flawed the NICE guidelines still are. What always jumps out, for me, is the definition of the symptoms, which is always fundamentally problematic. For example, there is no mention anywhere in their lists, ever, of immune abnormalities or neurological symptoms. Yet who of us here does not have such symptoms? They are required for all the stricter definitions, they are almost certainly at the core of the aetiology of ME, they are the most severe and clear medical symptoms, with masses of research into the immune abnormalities, yet the NICE lists never even mention them at all. Against that background, I don't see how we can have confidence that there has been a radical change enabled by the latest NICE guidelines.

    Having said all that, I do think there are some clear positive signs and that some small seeds of change have been planted in the last year or so. The latest research program, though it's still pathetic for a disease that affects maybe 250,000 people, is much better than previous MRC programs. The most hopeful aspect of those minutes, for me, was the note that there is a very small Rituximab study included in one of the projects; that was news to me and there was some suggestion that some of these projects may be a little better than they at first appeared.

    The levels of funding are still pathetic and insulting, and the general focus is still based on fundamental misinformation, radically out of step with the best research in the US in particular, but things have improved a little recently and those seeds of change need to be nurtured, rather than attacked, if they are to grow into something better.
     
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  12. Astrocyte

    Astrocyte

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    Rightly or wrongly, that's what I understood too.

    It certainly doesn't seem right. But they probably don't have a marketing budget to draw in more researchers and although bigger funds might be enticing as Prof Saville said, researchers are loathe to venture into poorly defined illnesses.

    I think you're right. Maybe we should crowd source (very fashionable and effective methodology there) studies that we feel should be done, refine them and approach charities to engage researchers. You have marketing knowledge? Do you have any ideas up your sleeve? Though they need not be up your sleeve to be helpful.
     
  13. DaiWelsh

    DaiWelsh

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    I didn't see that particular quote but if it was said it sounds like a possible platitude. This is the part I was referring to:

    To me that does not say they got lot's of high quality proposals, it says they got precisely the same number of high quality proposals as the number of proposals they funded. Hence had the pot been 16m they would still have funded the same set of proposals and rejected all the rest, even if that left money in the pot. Of course it could be that had there been 16m on offer there would have been lots more quality proposals as per my point in previous post, but that is a separate point.

    I don't want to be too much of a negative nelly, I think it is great that the funding has happened and it may indeed indicate some sort of sea change, but I do see a possible risk/opportunity wrt getting more quality proposals in?
     
  14. Bob

    Bob

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    Even the wonderful Countess of Mar advocates for the NHS ME services to be maintained.
    I guess the thinking is that some services for ME patients are better than no support at all.
    AfME did a patient survey, and most patients responded that they wanted these services to be available, so that's what AfME are advocating for.
    But that assumes that most patients are aware of the inadequacies of the services, and of how ineffective, and potentially damaging, CBT and GET are.

    The NICE guidelines are a farce. The only good bit is the section that says that ME patients should be allowed to refuse treatments (i.e. CBT/GET) without prejudce to their overall treatment program. ("Overall treatment program"?!? That'll be the day!) That should mean that we are allowed to refuse CBT and GET without being accused of not wanting to get better etc.

    Another thing to note is that the Sjgrens syndrome study does include some CFS patients as well. That's something I didn't know before. They are going to update the online info to clarify.
     
  15. DaiWelsh

    DaiWelsh

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    Yes, that is certainly true, but I am pretty sure funding is a significant factor also. There seems to be a catch 22 or vicious circle in play: difficult illness - poor outcomes in studies - lack of funding - lack of quality researchers + difficult illness - more poor outcomes. Not that I am suggesting there are no good researchers in the field btw, it is about overall effect.

    I think you are right and I would hope some of the charities are active in this? I am not much of an advocate I'm afraid as I still (barely) hold down a teleworking job and have very little spare energy for much else. As far as marketing goes it is also not an area of strength, above quote referred to a seminar I attended as a freelancer needing to learn to market my services better. ;)
     
  16. Bob

    Bob

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    Sorry, I misquoted him... I've edited my previous post... I was editing it while you were posting.

    I changed it to...

     
  17. Bob

    Bob

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    I wasn't sure exactly what he meant there either.
    First I thought he meant that they weren't going to fund any more studies for 2-4 years.
    But then I thought that they would fund new studies, as good quality applications come in, but there wouldn't be any further ring-fencing.
    In the end, I think he just meant that we have to be patient for the present round of funding to bring us any results... That's it's going to be a while before we see any benefits.
     
  18. Wildcat

    Wildcat Senior Member

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    Give it another decade, and the people who are optimistic about the MRC Proposals, and about these Minutes of the APPG meeting , will have learned to read the double speak and rhetoric that has been spouted for the last two decades!

    We have heared it all before - and learned to read the evasive-but hopeful scamming speech from the MRC and APPG

    Maybe you have another decade to wait but I don't.

    Those of us who have bothered to investigate and analyse the UK ME MRC ETC politics of the last decades are NOT impressed.... Just more evasiveness and double speak..
     
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  19. Desdinova

    Desdinova Senior Member

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    From the notes it feels a little like another Dog and Pony Show put on by another government health agency.

    Is it just me or did he not answer her question?

    Is it publicly known (available) which proposals were turned down, what they were and who proposed them?

    One tends to lash out or attack when one feels abused, threatened and/or endangered. Stop tying everything to and pushing the biopsychosocial model. People also tend to get angry and lash out when they're ignored, lied to and strung along.
     
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  20. Wildcat

    Wildcat Senior Member

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    I heared Professor Holgate speak at the RSM Conference of August 2008 about his plans for ME research - these MRC proposals are nowhere near what was spouted by Prof Holgate in 2008.


    Please wake up peeps and stop being so grateful for crumbs (especially when the crumbs are not spent on Neuro-ME) and try not to take what the MRC/APPG/ETC state at face value.

    Do research the MRC/ME history and the history of the APPG - to identify where we are being scammed again, fudged again, and lead up the garden path, again!
     

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