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!
The Lipkin Microbiome Crowdfunding Campaign Launches!
An ambitious $1.27m international, patient-led fundraising campaign storms into action. Sasha invites you to join it!
Discuss the article on the Forums.

An adjournment debate has been granted to Ian Swales MP (UK Parliament)

Discussion in 'General ME/CFS News' started by Bob, Jan 27, 2011.

  1. Mark

    Mark Acting CEO

    Messages:
    4,447
    Likes:
    1,813
    Sofa, UK
    Mark, that was a great letter...but I do have some issues with the 'depression' theme which I've expanded on here:
    http://forums.aboutmecfs.org/showthread.php?4510

    I think this is a critical issue, and knowing yourself and Bob as I do I feel confident that we can navigate together towards a positive resolution of the points I've made, so I hope we manage to discuss those problems further.

    To sum up my quibble: just because Wessely et al define 'ME/CFS' more broadly than 'CCC ME', and just because their studies purport to show some improvements after CBT in some people they study under those definitions, does not mean that people fitting the broader definitions, but not the stricter CCC definitions, 'just have depression'. Even the small proportion who say they improved after the CBT may not have improved really (all the available evidence on that question shows no change in levels of physical functioning despite improvement on the questionnaire scores), and even those that did improve didn't necessarily 'just have depression'.

    That said, these discussions just led me to read the Oxford criteria again, for the first time in ages, and I don't know why I never fully registered just what an appalling travesty they are: that definition is a vile manipulation and indistinguishable from depression, as I know very well having had clinical depression myself and recovered from it, leaving me with just the ME to contend with...sheesh, I knew it was a sick definition, but I'd forgotten just what a disgrace it is...

    Even so, I think a note of caution is needed before assuming that everybody who falls under 'CFS' but doesn't have 'ME' just has depression...in many ways it's even harder to be labelled that way by fellow sufferers than by the psychs...

    Anyway...on the subject of the adjournment debate, I would like to write more but I'm out of time. I think it's mostly been said.

    Great work by Ian Swales MP; the MEA site says that the impetus and much of Swales' text for this came from Jan Laverick, who if I'm not mistaken is a forum member though I won't name her now in case I've got the wrong Jan :) but assuming I'm right she does some fantastic work so big respect to Jan for what she's achieved today. This is an inspiration to all of us to work with our MPs and to keep the pressure up; we have some momentum in parliament so if your MP hasn't signed the EDM, keep badgering them until they do...

    As to the minister's response, well how depressing! A well-constructed piece of flannel and misdirection as you might expect, and the malicious influence of the advisors whispering in his ear seemed evident to me. At least one of the lies was flagrant enough to be outed clearly - the "CFS/ME is the WHO definition" argument...that really wants hammering now as a big campaign issue, until that's nailed and backtracked on. The minister may perhaps not appreciate having been briefed to tell lies on the record...

    I'm guessing the origin of that is this UK-based organisation/committee that Wessely got himself on and got something put under the WHO banner? Can't recall the details, but there's definitely a history of something that they claim is WHO but isn't really, just a "UK WHO committee" of some sort, a psych lobby manipulation to get their theories listed under a WHO letterhead...anyway, whatever I'm remembering there, or wherever this 'CFS/ME' myth comes from, demands exposure now.

    Another thing that stood out for me was this "mental health stigma" meme, which also wants burying. The whole idea that we take offence about being fobbed off by psychs because we are prejudiced about mental illness - well that's another really insulting meme in itself! No, folks, it's the psychologists and psychotherapists who suffer from the stigma, not the mentally ill. Many of them surely deserve it, but it's a great shame for the many good people who work in mental health that their profession is so tainted by charlatans.

    I've worked with the mentally ill for several years, I've studied psychology and had an interest in mental illness before I got ME, I have friends who've suffered severely from mental illness, I've had clinical depression and been cured of it, with the help of group CBT (and CBT techniques were actually very helpful to me with that), so my raging fury at the psychologisation of 'CFS' and my anger at the refusal to identify a physical illness as a physical illness is NOT rooted in some sort of stigma around mental illness. Hundreds of thousands of people getting upset about people repeatedly insisting they might be mentally ill and theorising about psychosomatisation, does not happen because they are prejudiced about the idea of mental illness. It happens because their illness is blatantly not a mental illness, period.

    Anyway...that meme has an origin, it's persistent, it's a theme of the psych lobby, and it's clear evidence of the sort of people who are whispering in the minister's ear. Somehow we need to root out those...er...people...because it's their insidious influence behind the scenes that is still keeping us down...

    I hope we do get a hansard of the 'debate' because there was a third point that stood out for me which I now forget...and it'll be a good document to critique. Hmm...perhaps the point I am thinking of is that this 1.5m represents a funding decrease in reality, when averaged together with the previous year it is still 800k per annum which is the historical average of what the psychs steal from us every year: inflation-adjusted, the 1.5m is a small cut to their budget...

    But a final point: the summary of all this, for me, is that there is momentum in the house, that this really is the time for us all to follow up on that, to keep up the pressure on our MPs...but they all need to understand that, as things stand, our representatives are powerless to change the situation! As long as the MRC maintains its psych lobby veto on ME/CFS research, what parliament thinks will remain irrelevant.

    The assumption that it is for scientists to determine what should be funded, and that government should not interfere in the technical decisions, is undestandable, but it's not good enough in this case. The problem goes too deep. What we need to get to the bottom of now, is how these supposed scientists got such political power, in whose interests they exercise that power, and how do we get rid of them? (to paraphrase Tony Benn's 'questions to powerful people').

    This particular unelected committee - the MRC - gets to decide who is funded and who is not, and who is funded are psychs, denialists and obfuscators, and who is not funded are scientists trying to research ME. With this next funding round, we will see if that changes. (If it does not, then...well...let's just say we can quite easily be a lot more angry and aggressive in our approach than we have been to date...they ain't seen nuthin' yet...so far, we are just beginning to gather our forces... :) )

    So: it needs to be made clear to our representatives: it's the MRC itself that's the problem, their misrepresentations of what constitute "high quality proposals" are not democratic, they are not accountable (we don't get to see the details of the failed funding proposals, even under Freedom of Information), they are not experts in ME/CFS, and they can not be trusted to enact the will of parliament in this matter - they are subverting both medicine and democracy and they must be brought to heel.

    Time to look more closely at the constitution and membership of the MRC...
  2. Enid

    Enid Senior Member

    Messages:
    3,309
    Likes:
    837
    UK
    Well said Mark now having had time to mull over. Flannel from the minister stands out and deeply suspect of his advisers (cronies so to speak - the over influence of a certain body/individuals of psyches). Great work by Ian Swales. How do we go from here. It also struck me that the constitution of the MRC needs looking into too - the CFS/ME title sounds deeply suspicious - keeping things in the Psyches fold ? It stinks.
  3. Bob

    Bob

    Messages:
    7,365
    Likes:
    8,409
    England, UK
    Hi Mark,

    I haven't read your other post yet, on the other thread, so I'm just responding to this one at the mo.
    I agree with everything you say.

    I've also suffered from depression in the past, and didn't have a problem admitting that I had depression, and that I needed appropriate treatment for depression. The minister was very patronising, misinformed and misled by his research team.

    Yes, I believe that the minister had his response written for him by civil servants. Civil servants do the research work for the minister, and they were just going over old government lines on the subject. It's a shame that the new political team at the Dept of Health haven't brought some fresh ideas and swept out the old ways of thinking.

    The LibDems had quite a good pre-election policy on ME, and proposed setting up a new independent scientific committee to oversee government funding for research into ME. This might be quite helpful, but I also think that the diagnostic criteria need to be changed before we are going to make any progress in this country.

    As to your question, Mark, about different levels of severity of ME, I totally agree with your concerns here, and the matter was partly addressed in a discussion by Mikovits, Whittemore, Klimas and Jason in a round-table discussion in the 2010 Invest in ME conference video. (It was very interesting if you haven't seen it.) They were saying that you have to look at the entire history of the person's illness when making a diagnosis, and that you can't take a snapshot of symptoms, as someone might be managing their illness well, and many of the original symptoms may have diminished. They were all in agreement about this, and they were saying that they see a lot of this in their clinics, where symptoms vary over time. So maybe that's the way to address that issue, which I agree needs to be carefully looked at.

    Yes, it's the stranglehold of the psych lobby within the MRC that is a major problem for us, but this also goes hand in hand with the diagnostic criteria problems.
    I agree with you Mark that we need to highlight the shortcomings of the MRC, but as long as CFS is an umbrella diagnosis, then we won't be able to get rid of the psych's influence, as they will still be relevent to the diagnostic criteria.
    By changing the diagnostic criteria, to only include the neuroimmune disease, ME, then we remove all the psychs from our lives immediately.
    That's one reason why i think it is so important to campaign for a new diagnostic criteria to be used before we are going to make any progress.
    Maybe it needs to be a two-pronged approach... To address the diagnostic criteria, and the MRC. But I think if we change the diagnostic criteria, then the MRC problems will automatically be self-corrected soon afterwards.

    Mark, I am guessing that we are going to be very disappointed with where the MRC's 1.5m goes... I don't think it's worth sitting back and waiting for that... If it's going on projects to look at sleep problems etc, then it's not going to find a cure. Bad sleep is a symptom of ME, not a cause of it, and I doubt if sleep researchers are going to be at the cutting edge of immunological research.

    I think we seem to be on a path of converging campaign ideas here... I hope so anyway.

    I'll read your other post a bit later, and see if I can address any of the issues you raise. Need a rest now!
  4. Enid

    Enid Senior Member

    Messages:
    3,309
    Likes:
    837
    UK
    Can I suggest the Canadian Consensus having been through the lot at different stages. "Snapshots" of the disease - as if frozen in time - are simply irrelevant.
  5. cigana

    cigana Senior Member

    Messages:
    522
    Likes:
    138
    UK
    Hi Bob,

    I like your argument that the name change has to come first. And I despair too at the way charities don't seem to push together on this (or anything else for that matter). Do you know if the name XAND still stands even if XMRV isn't found to be causal?


    Hi Mark,

    I completely agree with what you said regarding the depression. In the letter, I had to simplify things in order to make it readable, so I chose to not mention the details you discussed and qualified this with "based on real life".

    ------------------------------------------------------------

    Lot's to think about! Like Bob, I think we're beginning to converge on one or two central issues. We just need to converge on how best to tackle them too!

    Mark

    EDIT: Maybe the WPI are already in a position to rename the disease, based on their own biomarkers and tests?
  6. cigana

    cigana Senior Member

    Messages:
    522
    Likes:
    138
    UK
  7. SilverbladeTE

    SilverbladeTE Senior Member

    Messages:
    2,050
    Likes:
    1,527
    Somewhere near Glasgow, Scotland
    the bit with heart/neurological doctors was interesting! :)
  8. Bob

    Bob

    Messages:
    7,365
    Likes:
    8,409
    England, UK
  9. LaurieM

    LaurieM

    Messages:
    72
    Likes:
    5
    UK

See more popular forum discussions.

Share This Page