1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
In Brief: The Adrenal Glands and ME
The second in a new series of ‘In Brief’ articles, where Andrew Gladman provides a helpful insight into the science behind fairly common topics, exploring how they relate to ME/CFS. This time he discusses the adrenal glands and why they can be such a talking point ...
Discuss the article on the Forums.

UK: House of Lords: Countess of Mar asks real reason for ME blood ban, 8 Nov

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by Sasha, Nov 8, 2010.

  1. Sasha

    Sasha Fine, thank you

    Messages:
    7,435
    Likes:
    5,300
    UK
    Just idly googling and found this YouTube clip from the BBC Democracy Live channel, broadcast today (Monday, Nov 8). The Countess of Mar is asking for the reason behind the UK blood ban for PWC.

    I haven't watched it yet; it's 7 mins and I'm having trouble getting it to load (slow connection my end, maybe).
  2. urbantravels

    urbantravels disjecta membra

    Messages:
    1,333
    Likes:
    505
    Los Angeles, CA
    I also found this:

    http://www.epolitix.com/latestnews/...e/reasons-for-blood-donation-ban-are-unclear/

  3. Sasha

    Sasha Fine, thank you

    Messages:
    7,435
    Likes:
    5,300
    UK
    Argh, Lord Howe is repeating that cr*p about how seriously the MRC takes biomedical as opposed to psychological research into ME and that they spent 109,000 on it last year. 109k! I bet his annual expenses are more than that. We are an international joke. :(
  4. urbantravels

    urbantravels disjecta membra

    Messages:
    1,333
    Likes:
    505
    Los Angeles, CA
    OK, as an American I don't fully understand what I'm seeing and what it means. Is this happening as part of a legislative session or some kind of hearing?
  5. Sasha

    Sasha Fine, thank you

    Messages:
    7,435
    Likes:
    5,300
    UK
    Thanks, urban. I'm glad the Countess got up and asked some questions and I suppose hindsight is a great thing but I wish she'd ask a question that would include anticipating their stupid answers which they keep repeating and so which can be anticipated. Anybody who asks about funding research ought to be saying, "The MRC spent the insulting low sum of 109,000 last year on biomedical research into ME/CFS. Why does the MRC fail utterly to take this disease seriously?"
  6. Sasha

    Sasha Fine, thank you

    Messages:
    7,435
    Likes:
    5,300
    UK
    It's just a Q&A session on all sorts of topics (not even just health) where the lords & ladies in the House of Lords get to ask ministers (who are responsible for big areas such as Minister for Health, Minister for Education etc.) questions about government business.

    You maybe know this but the House of Lords is the non-elected second chamber in our government; the elected one is the House of Commons. The House of Lords doesn't get to legislate but it acts as a second brain and talking shop for the House of Commons. You can inherit a lord/lady title from your dad and automatically get into the House of Lords; you can also get in if you're a bishop; and you can be awarded a life peerage for good deeds/connections and get in that way. An anachronism but it means you can get "wild cards" who aren't accountable to anybody which can work to your advantage if you're an underdog cause not favoured by party politics.
  7. Sasha

    Sasha Fine, thank you

    Messages:
    7,435
    Likes:
    5,300
    UK
    Am really feeling very glum about this monumental fob-off...:(:(:(:(:(
  8. Sasha

    Sasha Fine, thank you

    Messages:
    7,435
    Likes:
    5,300
    UK
    Actually just cheered up no end at the sight of those three guys in wigs (at 4:23 mins - take a look, my non-UK friends! This is what our barristers wear in court) and the bishop flat-out asleep next to the Baroness Finlay asking the question immediately after that shot. I feel better! :D
  9. Min

    Min Senior Member

    Messages:
    1,045
    Likes:
    761
    UK
    Good for Lady Mar & Lord Skelmersdale, at least some people are asking questions on our behalf
  10. Sasha

    Sasha Fine, thank you

    Messages:
    7,435
    Likes:
    5,300
    UK
    Having watched the whole thing now, one could interpret the various questions from different parties as indicating that all vested interests, including the psych lobby, have their "plants" in the Lords. Hard to know. There were a couple of questions/statements along the lines of "well, they get CBT" and "well, they're not well enough to donate blood, are they, so that's the reason for the ban". Stupid things to say, if you are well-informed.

    Howe was at least stressing that CBT is for all illnesses and that ME is a physical disorder so CBT can only be an adjunct to treatment (what treatment?) but if that's his view, I don't see how he can square it with letting the MRC get away with spending a pitiful 109k on research. Like the Americans are saying, "Show us the money".

    I don't want to have a retrovirus but if XMRV doesn't pan out and pull us out of this mess, I don't know what our chances are.
  11. ukxmrv

    ukxmrv Senior Member

    Messages:
    3,264
    Likes:
    1,631
    London
  12. zerothehero

    zerothehero

    Messages:
    3
    Likes:
    0
    I just want to correct a little misunderstanding I spotted in some interpretations of these exchanges. It seems the 109,000 for research was the complete total (including psychiatric research). Lord Skelmersdale, who rose to ask a question late on, was asking the Minister how much of the 109,000 yearly from the MRC is for clinical research as opposed to psychiatric research. The Minister ducked the question, said he didn't know the answer and promised to write to Lord Skelmersdale with the answer later. The question confronted the open secret about MRC funding for ME reserch in the UK...to the best of my knowledge the MRC has refused all applications for clinical research funding for many years while continuing to support psychiatric research. I believe this is part of the reason for Jonathan Kerr's decision to withdraw from ME research earlier this year. There is no public funding available in the UK.
  13. Sasha

    Sasha Fine, thank you

    Messages:
    7,435
    Likes:
    5,300
    UK
    Thanks, zero - so, zilch on biomedical stuff. Even if it had all been on biomedical research, 109k is an utterly pitiful sum. :(

    I would have thought the Countess would have known that and could have pointed it out rather than asking a question about it. I don't mean to appear ungrateful for her actions on our behalf - but I'm frustrated that the Minister for Health was left in a position to call 109k the MRC taking ME seriously. :(

    I just listened to Radio 4 (Today in Parliament, probably) summarising what went on today in both houses and they didn't cover the ME bit.
  14. Sasha

    Sasha Fine, thank you

    Messages:
    7,435
    Likes:
    5,300
    UK
    Well, he certainly gave that impression! I had thought I was just being cynical. How do these people sleep at night?
  15. Mark

    Mark Acting CEO

    Messages:
    4,461
    Likes:
    1,839
    Sofa, UK
    Hi zerothehero, welcome to the forums.

    I'm not sure what the situation is regarding "clinical" research, but I don't think your assertion that the 109k is the total research budget is correct. Last time I looked, the total budget was for about 850k, of which roughly 100k could be said to be "non-psychiatric" research - i.e. the great majority of the ME/CFS research budget goes to the psychs. When we listed the projects a while ago, there was just one non-psych project, and I think it was Jonathon Kerr's (but could be wrong about that) - and I guess that one project would be that 109k.

    Although the 800k figure sounds pathetically low, as a total figure I gather it's actually not too out of line with other conditions, proportionate to number of sufferers. That figure doesn't include all publicly-funded research: it would probably be hard or impossible to determine that figure. As an example: who funded Wessely and McClure's failure to find XMRV? That wasn't listed anywhere...until it appeared out of nowhere.

    The issue about the MRC's ME/CFS budget is the way that it's still dominated by the psych lobby, who veto almost all non-psych research. Repeated questions in the house have failed to get an honest answer to the question of how much of the research is psychological and how much is biomedical. I'll watch the video now to see if any progress at all has been made on that front...
  16. zerothehero

    zerothehero

    Messages:
    3
    Likes:
    0
    Mark, I don't think I got this wrong, the figure I quoted was not my assertion, it was the figure quoted by the Minister (in the film clip) for total MRC research funding of ME during 2009/2010. I was just reporting what was said in the clip. If the figures are wrong it's because he got them wrong. I don't know what the true figure is. Actually, I don't know if the MRC are still refusing all applications for biomedical research funding. I know they were until recently, and that the only way any biomedical research got done in the UK for many years was by private funding.
  17. Mark

    Mark Acting CEO

    Messages:
    4,461
    Likes:
    1,839
    Sofa, UK
    You're right, the minister did say this, and the figures are indeed wrong because he got them wrong, unless I'm mistaken. It's hard to believe that funding really has dropped to the derisory sum of 109,000 for a "strategic priority" but if that turns out to be true it looks like a darn good thing to hang a campaign on...

    "As regards research into CFS/ME..." (into what now? Does he mean ME/CFS?) "...the Medical Research Council is committed to supporting scientific research into all aspects of 'CFS/ME', including studies into the biological basis of the condition, and the evaluation of treatments, and in 2009/10 the MRC spent 109,000 on research directly related to the condition."

    My guess was - and is - that the 109k is a subset of the total budget, perhaps pulled out in response to previous parliamentary questions aimed at establishing how much of that research really was genuine biomedical research into ME.

    (Lord Skelmersdale asked how much of this research was biological and how much was psychiatric, and was promised a written answer. Hopefully that will illuminate this question soon).

    I had in mind the previous answer to this question, here:
    http://www.theyworkforyou.com/wrans/?id=2009-12-07c.304330.h
    ...which stated:

    In 2008-09 the MRC's total expenditure for research relating to Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) amounted to 728,000. This supported four projects including a 164,000 research programme led by Dr. C Clark at Queen Mary College, London on the general and specific risk markers and preventive factors for chronic fatigue and irritable bowel syndromes. CFS/ME continues to be a strategic priority area for funding and the MRC remains committed to supporting scientific research into all aspects of CFS/ME including evaluations of treatments and studies into the biological basis of the condition."

    That illustrates that 109k roughly equals one study, or perhaps part-funding of a few studies, and that the total budget is somewhat short of 1m. I've seen a figure of 850k in the same context of MRC funding, so I think that is the rough ball-park figure for the total MRC budget for ME/CFS. (there isn't a budget as such but you get the idea: a drop to 109k would seem very significant, if it were true.)

    I think it may have been Dr Kerr who is said to have commented that applications for biomedical research are/were typically given 8/10 and 9/10 by two of the assessors and 3/10 by the psych, and this serves effectively to block them from funding. The psych argument always seems to be that there 'aren't any good quality proposals' - turning the blame for the situation back onto the scientific community as a whole - but it seems pretty clear that their representatives are the ones who have been passing this judgement on all biomedical research proposals.

    I think that the time has come when continued pressure on these issues may at last result in a change of direction for MRC funding. This central issue of MRC funding is largely symbolic, in that the amount of money, and the amount of research that we are talking about, is pathetically small anyway. But the more I talk to ordinary people about ME, the more I find that most educated people are aware of it (but not of CFS), and tend to think that it has long ago been accepted as a biological rather than a psychiatric condition. A few people I spoke to were appalled by the news that it is still treated and funded predominantly as a psychiatric condition. All that really seems to be needed is to continue to apply pressure and to shine a light onto the reality of research funding over the last 10-20 years, and change has got to come.

    As campaign points go, being able to say - with the minister's quote in hand - that ME/CFS research received just 109k last year from the MRC, while they continue to describe it as a "strategic priority", and that (say) 90% of the MRC budget over the last decade has gone to psychiatrists...those are really huge political slogans to rally round and to put to the public, and they make the case very clearly. That's why it seems so important to me to try to get to the bottom of the MRC funding for ME/CFS over the whole of the last decade, to determine accurately what was psych and what was biomedical research, and to get parliamentary answers confirming those figures. The numbers are too confused at the moment: we need to know exactly what money went to psych and what went to biomedical research before we can really make the case effectively.
  18. Mark

    Mark Acting CEO

    Messages:
    4,461
    Likes:
    1,839
    Sofa, UK
    Here are some parliamentary answers on XMRV:
    http://www.theyworkforyou.com/search/?s=xmrv&section[]=wrans&section[]=wms

    This one got me going:
    http://www.theyworkforyou.com/wrans/?id=2010-10-18a.16644.h

    "...in patients with chronic fatigue syndrome, sometimes referred to as myalgic encephomyelitis..." (Anne Milton MP)

    As with the minister's answer in the Lords referring to an entity called "CFS/ME" (what's the history of that switcheroo I wonder?), it's these sort of apparently trivial but telling details that I frequently use to "read the tea leaves". "Sometimes referred to as ME" indeed! Er...and why is it "sometimes" referred to as ME? Could it be because that is and always has been its name? What do the WHO call it? What did they call it in 1955? Exactly why do you want to disassociate from that name? Do you do things like that deliberately to suggest conspiracy and foul play to anyone who knows anything about these matters?

    Such a disingenuous little quote there, and so clearly a political line to those who know what that whole argument is about. These answers are carefully prepared for the ministers, a comment like this doesn't come from nowhere: it's a snide attempt to popularise the term CFS and undermine ME. We really do have to hang on to ME, IMO: amongst people I've spoken to they know what ME is and the argument that it is real is won as far as they're concerned (amongst decent people anyway). Whereas CFS really is just our slave name, and nobody I've spoken to has heard of it, never mind "ME/CFS".
  19. Mark

    Mark Acting CEO

    Messages:
    4,461
    Likes:
    1,839
    Sofa, UK
    "However, from 1 November 2010, CFS/ME sufferers will no longer be able to donate blood. The UK Blood Services recognised that exclusion from donation by people with ME/CFS needed to be brought in line with that from other relapsing conditions for the protection of the donor, and not because of potential infection risks."

    I just loved the way that the Countess of Mar praised the application of the precautionary principle and then asked "why the department of health didn't say this in the press release...they just said it was for the benefit of the patients and nobody but nobody believes it." - and in the written question:

    "
    The purpose of my question is to persuade the Department of Health to be more transparent in its dealings with the public"

    Absolutely spot on: and to those reading this who may sometimes wonder why some ME/CFS activists, especially in the UK, have a tendency towards conspiracy theories, well here is a very good illustration of exactly why: it's because they continue to blatantly lie to us, and it makes us wonder why they do it.

    Anyone who seriously believes this blood donation ban is for our own good, in case blood donation by an ME/CFS patient in remission triggers a relapse - in the absence of any evidence to that effect - anyone who believes that really will believe anything. And people who are being blatantly lied to and lied about, can quite reasonably be expected to ask serious questions of those doing the lying, and to wonder what the hell is really going on.
  20. Mark

    Mark Acting CEO

    Messages:
    4,461
    Likes:
    1,839
    Sofa, UK

See more popular forum discussions.

Share This Page