The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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MEA responds to PACE trial recovery paper: 15 Feb 2013

Discussion in 'General ME/CFS News' started by Sasha, Feb 16, 2013.

  1. Sasha

    Sasha Fine, thank you

    WillowJ, biophile and alex3619 like this.
  2. golden

    golden Senior Member

    it was 'ok' but i think the countess de mar does better.

    also why dont these doctors simply state:

    M.E. is a physical illness so stop trying to treat it with psychological treatments.

    disgraceful distortions of trial results are happening throughput the NHS. its a massive problem. it also disempowers patients as they have no accurate data to make a choice via lawful 'informed consent'.
    snowathlete likes this.
  3. snowathlete


    I agree golden, it was 'ok' but I think he is bating on the wrong points. He starts off correctly talking about the misuse of the word recovery, that in my opinion should be the entire focus. By talking about all the other stuff, what happens is it gives them the opportunity to reply only to those points that they feel most comfortable talking about. If you focus on only the strongest point which is the blatant misuse of the term recovery and the huge consequences of that, then it much harder for them to defend.
    SOC, WillowJ, alex3619 and 1 other person like this.
  4. WillowJ

    WillowJ คภภเє ɠรค๓թєl

    WA, USA
    He's talking politics. You notice that he said 'phenotypes that equate to' ME/CFS, not ME/CFS itself. Being translated, that means: they may appear to have something called ME/CFS if you superficially look at symptoms deemed to be that (without really thinking about what ME/CFS really means according to the better research, and without trying to separate it from other conditions which might have similar symptoms).

    However as snowathlete pointed out, better politics would have been to not feel he had to defend against the STRAWMAN/AD HOMINEM that we are somehow opposed to psychology per se, but to simply state the strongest arguments like the ridiculous convention for 'recovery'.
    SOC, alex3619, Roy S and 1 other person like this.
  5. Research 1st

    Research 1st Severe ME, POTS & MCAS.

    Why is no one of influence stating that ME is a physical illness in the UK?

    Here is why:

    1. The first reason is medical politics. Chronic Fatigue ('ME') charities want to remain influential if possible and also to receive government grants for funding, for not being outspoken and rocking the boat. Without influence they have no meetings with the media to have responses printed, no access to medical journals, and no meetings with the DOH.
    You will see a certain charity therefore appears in a 'CFS/ME' video, produced by the DOH and the NHS precisely because of this reason. Conversely you will not see other charities who have a photo of a deceased girl with ME (RIP) on their front page ever appear in a DOH video about CFS/ME, because of course, they would want to be telling the public people can die from ME. The public aren't aware of this, no NHS website will discuss this.

    So, if fatigue ('ME' charities) are on-side with people who want to make ME a 'mind-body' illness, they can can receive DOH grant money for repeating a spin message that CBT helps some people. This is the line the DOH want, they do not want outright rejection of CBT, because then the fact there is no treatment is exposed to the general public. People with ME, are aware there is no treatment of course, they don't respond to psychotherapy (unless mentally affected) and no physical treatments are available for them. This is the same, worldwide.

    2. Secondly, it is because of how one defines ME, in the UK.

    In the UK, ME is not viewed by the Department of Health as a single disease and they ignore WHO coding rules of dual coding, by dual coding CFS with ME any way! From this bizarre decision, ME is confusingly incorporated into something called 'CFS/ME'. CFS/ME then describes not a description of muscle pain & neuroinflammation but now any possible reason for a person complaining of new onset chronic fatigue unrelieved by rest that is not explained by medical science. Something far removed, from ME, which is description of a state of neuroinflammation and affected muscles.

    For this reason, 'ME' (via CFS/ME) has to now include fatigue syndromes of no known cause, and therefore few cases of 'ME' will be ME. Due to this designed in anomaly, a British physician cannot reliably argue that ME is a sole physical disease any longer (since the inception of CFS/ME), because ME is joined with 'CFS'. This is the exact opposite of the USA, where ME is not diagnosed at all, and not linked onto CFS. The Americans (via the CDC) deny ME outright. (Remember it was the Americans who conceived CFS in the first place, and the mass hysteria association of post viral disability being impossible). This of course is a nonsense scientifically, because one can now be diagnosed with Post SARS and Post Meningitis fatigue syndromes.

    So to recap:

    The reasons we have no one in the UK being brave enough to call ME, ME, is because of politics and how ME is defined in the modern era, through the CDC creating CFS, through the two previously discussed mechanisms:

    *We have America denying ME outright.
    *And we have Britain tethering on ME with CFS.

    Through both of these enforced awkward phenomena, ME (neuroinflammation) cannot be reliably claimed to be a physical disease any longer, because little to no research data exists on ME, and ME research cohorts are not screened for neurological abnormalities, they are simply a cohort of CFS sufferers meeting CDC criteria.

    There is plenty of biomedical data for CFS incorporating many people with severe physical diseases, however, the heterogeneity of the case definition of CFS, prevents any firm conclusions ever being made on what CFS is.

    CFS remains unexplained. (As is the aim of CDC CFS. 'unexplained chronic fatigue').
    ME remains a mystery. (Not helpful if we want to find out what my cause ME).

    Unfortunately this situation cannot benefit either CFS or ME sufferers, until someone is brave enough to alter the CDC case definition of CFS, or to include ME over in the US. It is unlikely this will ever happen due to reasons we are not party to or will ever be.

    If there ever is a treatment for physical illness CFS that looks rather similar to 'ME', then a new name and case definition will have to be created by the CDC and other countries, because there are now millions of people globally with CFS, and these people cannot just be dumped and ignored if a medication, is proven to work for a subset of CFS (ME) sufferers.

    The whole situation politically and medically is a big tragedy, and if you say this publically, and you point to teenagers getting ME and paralyzed from school vaccinations (See case of Lynn Gilderdale) then you certainly won't be getting a Christmas card from those in power of the situation of keeping ME (CFS) controversial and mysterious. For something to be mistreated and ignored, it needs to remain just that.

    ME (CFS) patients dying 'naturally' from an undisclosed immune dysfunction or by taking their own lives, does not fit into the state sponsored political message of taking control of your own automatic negative thoughts on reasons of chronic fatigue, by using CBT and graded activity to modulate faulty illness beliefs and get back to college and work. Nope.

    For this reason, no one employed by the UK state as a doctor will publicly state ME is a sometimes fatal neurological disease. They will only do this, when a drug therapy is proven to work. Then they won't face possible retaliation from the GMC and/or other forces.

    The UK medical profession is a very old fashioned self serving system that has a mode of operation that is agreed upon when you become registered. You don't survive long in the medical profession by stepping outside the circle and sticking your neck out.
    SilverbladeTE and Valentijn like this.
  6. Firestormm


    Cornwall England
    I am interested in learning how any ME Charity in the UK receives Government funding? Thanks.
  7. SilverbladeTE

    SilverbladeTE Senior Member

    Somewhere near Glasgow, Scotland
    yeah Andrew Wakefield showed what happens when you rock the boat...

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