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Knitting Equals Pleasure, Despite ME/CFS
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Discussion of the NEW International Consensus Criteria

Discussion in 'General ME/CFS News' started by Nielk, Jul 21, 2011.

  1. Bob

    Bob

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    I'd like to give a very brief explanation of how the health system works in the UK, in case it helps anyone understand the UK perspective.

    All medical policies relating to our NHS (which probably about 99.9% of us use as our only health service) are determined by NICE (National Institute of Clinical Excellence), which is an arms-length (independently run) government body.

    NICE is run by bureaucrats, independently of the government, and is supposed to base its decisions on scientific evidence, not on politics.

    I believe that NICE determines some 'rules' that our NHS doctors are obliged to follow, and it also lays out some 'recommendations', that most of our doctors will follow, because otherwise they would have to do their own research, and make their own decisions, and they would also be more exposed to civil litigation if they did not follow NICE recommendations.

    NICE officially names our illness as 'CFS/ME', although patients often refer to it as just 'ME' (and doctors often refer to it as just 'CFS'!)

    The NICE guidelines for CFS/ME mention a few different diagnostic criteria, and recommend certain criteria over others, and give reasons why. (I can't remember the specifics, except that the CCC are specifically not highly recommended in the guidelines.)

    Now, I personally believe that it's a good thing that we have the new ICC so that the patient community can push for its use, if we all decide to. It's something else in our toolbox. I've now read most of the paper, and I really like the ICC, myself.

    But NICE will not be carrying out their next review of CFS/ME policy for a year or two (can't remember the exact date), and nothing can change in the UK until they do so. When NICE carries out their next review, then the patient community can try to get them to consider the ICC for adoption.

    Before then, we can try to make sure that politicians, patient organisations and the media know about the new ICC.

    Unless our largest patient organisations come down heavily in favour of using the ICC, then NICE will not seriously consider adopting them, partly because NICE is a very conservative organisation and things change at a snail's pace, but also because our whole system is totally monopolised by the psychiatric lobby. Also, our patient organisations are very conservative and tend not to (i.e. never) push for radical change.

    So things over here are pretty bleak.

    Who is our principle government advisor for CFS/ME? Yes, you've guessed it, it's Prof White, the arch-psychiatrist. (Well, I think it's him - I'm not 100% certain about that.) (And I think Wessely also advises.) So every time we contact the government to ask for change, they ask their advisors (e.g. White and Wessely) for advice, and the message comes back that we've got it all wrong, we are mistaken, and we are barking up the wrong tree. It never gets beyond that. It's like banging our heads against a brick wall.

    We can continue to put pressure on politicians and patient organisations for change, and to make sure that these new criteria are known about and have a high profile. I do like the suggestions that people have made, re making sure that doctors, and the media know about the new criteria.

    I had hoped that our new government would make changes when they got into power just over a year ago, because they had been in opposition for so long so I thought that they would have had a lot of contact with the ME patient community. But nothing has changed. One of the coalition partners (the Liberal Democrats) did have a good policy proposal, of setting up an independent body of ME experts to oversee the distribution of funding for scientific research into ME, but we've not heard anything about this since they got into office.


    Anyway, I just thought I'd point out why maybe some of the UK members of the forum are not jumping for joy about these new criteria, even if we are very enthusiastic about them (and I am very enthusiastic). Nothing happens over here until the bureaucrats say so, or until we get an enlightened government, and that's not for want of putting pressure on the government and having loads of high profile, high status, advocates over here.

    I hope that this message hasn't come across as really negative. This is just my experience of the world of ME in the UK, since I've been ill.

    There have been changes for the better in the UK system since I became ill about 8 years ago, but it's a very slow process, with two steps forwards, one step back.

    At the time of the next NICE review of CFS/ME, I can guarantee that there will be a lot of political action over here from ME patients, and the patient community may well decide to heavily push for the adoption of the ICC.

    For me personally, I really like the criteria, and I hope they are adopted swiftly by researchers.

    If these criteria are adopted by researchers immediately, or soon, then I think that this will bring great benefits to our community.
     
  2. Sasha

    Sasha Fine, thank you

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    I agree that this would be a very important point in the criteria - many of us have been sick for decades and our symptoms have changed. I hope they'll add that in. Is there any mechanism for suggesting that to them?
     
  3. Bob

    Bob

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    Good question. I'd like to tell them about their minor mistake re the 'NICE criteria'.
     
  4. Sasha

    Sasha Fine, thank you

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    Agreed!

    ..........
     
  5. Ember

    Ember Senior Member

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    I was able to thank Dr. Carruthers this afternoon, and I did pass on your concern to him.

    Speaking of the composition of the panel, Dr. Carruthers said that it had been important that this be a worldwide effort with a balance of researchers and clinicians on the panel. He added that he wouldn't have undertaken the task, which has consumed much of his energy over the past year, without Marjorie van de Sande as his coeditor. He also confirmed that Gordon Broderick was particularly helpful in bringing the project to fruition.
     
  6. max

    max *****

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    Source: Rensselaer Polytechnic Institute

    Troy, N.Y. Scientists at Rensselaer Polytechnic Institute have found that when just 10 percent of the population holds an unshakable belief, their belief will always be adopted by the majority of the society. The scientists, who are members of the Social Cognitive Networks Academic Research Centre (SCNARC) at Rensselaer, used computational and analytical methods to discover the tipping point where a minority belief becomes the majority opinion. The finding has implications for the study and influence of societal interactions ranging from the spread of innovations to the movement of political ideals.

    "When the number of committed opinion holders is below 10 percent, there is no visible progress in the spread of ideas. It would literally take the amount of time comparable to the age of the universe for this size group to reach the majority," said SCNARC Director Boleslaw Szymanski, the Claire and Roland Schmitt Distinguished Professor at Rensselaer. "Once that number grows above 10 percent, the idea spreads like flame."


    So, the non-existent epidemiology accuracy (remember the UK does not do these studies, it merely extrapolates data from elsewhere) of the patient population in the UK suggests 250,000 with ME, added to this perhaps 1,000,000 family members who are aware of the complexity of this illness. Maybe 75% of this number suspect there are questions to be asked. So we have for ease of calculation, 1,000,000 people realising that the shrinks do NOT have any convincing answers. This equates to 1.7% of the UK population on side with our viewpoint.

    How do we get another 8.3% (5 million) interested enough to reach the tipping point? I do not relish the idea of waiting another 14,000,000,000 years.

    max:confused:
     
  7. ixchelkali

    ixchelkali Senior Member

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    In Table 1, in the operational notes for PENE, it says "There may be marked fluctuation of symptom severity and hierarchy from day to day or hour to hour," but it doesn't address the question of symptoms fluctuating or evolving over time, or different phases of the illness. I agree that this is an important point.
     
  8. ixchelkali

    ixchelkali Senior Member

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    I agree that these new criteria will meet with resistance from some quarters, particularly in the UK. But here's one reason I think the ICC is significant:

    Many times in the past there has been good research done with a well-defined patient cohort that has demonstrated measurable anomolies in ME/CFS patients compared to controls. Some of these might even have been able to be used as biomarkers to define the disease. But then along would come some of our pals from the Wessely-White-Reeves school of CFS, and they would check the research on patients selected with the Oxford or Reeves empirical criteria, and would announce that their research didn't support the findings.

    Now researchers can use the ICC to define their patients, and when the Wessely-ites trot out their usual obfuscating response, the original researchers can discount their findings in the medical journals, because they didn't use the ICC to properly define their patient cohort.

    Also, when the psychobabble lobby conduct their own "research," like the PACE trial, it will be much easier to refute their results in the scientific journals, because they aren't using accepted international criteria to define their patient cohorts.

    I don't see this changing things overnight in the UK, but over time I think they could become more isolated, and their views less readily accepted.

    In the meantime, good research can go forward elsewhere that could lead to either biomarkers, or at least a clinical description that includes a profile of measurable differences (ie, lab tests). Then the next time the NICE guidelines are reviewed, patient advocates will have stronger, evidence-based arguments to use.

    I don't think the ICC is a miracle. I think it's a tool that can be a first step toward more effective research.

    I also think that there are scientists in many areas of biological research that haven't bought into the pyschobabble definition of CFS, who believe that patients are really sick, but have shied away from attempting research simply because the case definition was too fuzzy. This ICC may encourage them to get involved.
     
  9. acouchy

    acouchy Unwilling ME/CFS Participant Since 1998

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    This is awesome news! I had a feeling that Dr. Carruthers was incredibly busy and involved in something big. I just thought it was with using the 2 million dollar BC Government project to open a clinic. Yay Dr. C!!! I have nothing but respect for him. He is such a kind, compassionate man. I can't see him not listening and carefully considering patients concerns.

    Personally, I really like the ICC. I do understand some of the concerns but yet it does seem to be the sickest of sick and if it is used to select patients for future research studies I think that it is a good thing. In the end, all of us (even those of us who don't perfectly fit into it) will benefit.

    I think ME/CFS patients should demand complete transparency when it comes to which criteria is used when selecting patients for research studies. I also wonder what would happen if patients started refusing to participate in studies that do not use the ICC to select participants? Maybe some of them would find themselves unemployed. Yup... that's my wildest fantasy. :)
     
  10. max

    max *****

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    ...... 8.3% or 14billion years?

    We can drool over the new criteria as much as you like, we can send it to our GP's and even to our MP's, makes no difference - they will go with authority - we need something on a bigger scale than 'letters to the editor' etc.

    I'm with Wildcat on this - many are fast running out of time - ticking all the good bits and questioning the presence/inclusion of individual researchers, applauding the 'label' (which will be ignored) is all well and good, but, as far as I am aware, not much has changed - next we will be waiting for a few months for Ottawa, then it will be months until a meeting to discuss research direction, then awaiting funding from desperate patients limited finances, a couple of years for research, a further couple of years getting Wessely et al to admit the inevitable, trials to be undertaken, government approval - and before you know it the universe will have disappeared.

    All of the UK patient groups need to join forces with one single campaign - we have been subjected to manufactured confusion and our voices diluted and silenced - we need a 'mantra' - a few words we all say, something to hit back when officialdom repeats the familiar psychiatry chorus of 'CFS' - we will not change world opinion from this forum, so arguing the toss about the finer details of the ICC is interesting but not helping those that need help now, today, tonight.

    I dont believe Judy M et al read or need our input when it comes to the finer points of selection criteria, whilst I realise this portal provides valuable insight into the world of ME, (or whatever label is the flavour of the month), we should realise our limitations and concentrate efforts in campaigning with one loud voice.

    Whether or not I 'like' the ICC is immaterial - I find myself already questioning why it is, after 15 nightmare years, I still fall for the hype.

    Disillusiondly
    max
     
  11. Wonko

    Wonko Senior Member

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    I like the ICC, but then I liked the CCC, I'm obviously just fickle.

    Unfortunately, living in the UK, ICC or CCC makes no difference to me, 20 years (in my case) to get to a "first step" is far too slow - I'm nearly out of time.

    I dont have another 20 years, or even another year. Within 4 months, unless I'm very lucky, I'm going to be forced to declare myself fit for work, and attend full time "training", regardless of my actual condition, or be made homeless, and if I cant manage it then all benefits will be stopped. How long I'll last after that I dont know.

    So sorry but no jumping up and down with glee over the ICC from me. Selffish I know.
     
  12. Tulip

    Tulip Guest

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    The ICC is way better than the CCC which allowed for basically anyone to be given a diagnosis of ME/CFS. The vital component of the ICC is mandatory PENE and not "PENE and or fatigue". True ME has historically always had PENE.

    Unless I am blind Dr Hyde was missing from the list of Doctors, which is dissapointing..

    And I agree we need action NOW - if only there were major league celebrities interested, that is how HIV patients got a lot of their help and still are..
     
  13. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    We all need to go and donate blood and advertise we are doing so!
     
  14. acouchy

    acouchy Unwilling ME/CFS Participant Since 1998

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    Well if none of them want to do it for free, maybe we should start raising money and hire one. Just an idea.
     
  15. max

    max *****

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    acouchy ...... hire one. Just an idea.


    who?

    heapsreal ....... We all need to go and donate blood and advertise we are doing so!


    Brilliant !
     
  16. acouchy

    acouchy Unwilling ME/CFS Participant Since 1998

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    I'm not really sure who. Hmm... I think Cher would be great. Don't know if she would do though. Probably need to find a big celebrity who can't say no to money or really needs money.

    Okay, it started off as kinda funny to say but I think it seriously could work. Cripes, the naysayers play down and dirty so should we.
     
  17. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    could we pay a celeb enough money.

    hey what about Charley Sheen, we could say he doesnt have fatigue just mostly neurological effects. lol.

    cheers!!!
     
  18. max

    max *****

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    no, we need someone between elvis & God to do this


    its 4-50am

    zzzzzzzzzzz time for me - I.ll leave the forum to sort this one out and come up with the answer then.
     
  19. Tulip

    Tulip Guest

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    Cher is a bit of a ditz and only had "CFS" for a year, so in my view she didn't have what we all have - ME.

    Blake Edwards had ME for 15 yrs and he and his wife Julie Andrews tried to raise money for ME through functions at their house, but never made anything...maybe Julie Andrews? She has come back in popularity (Princess Diaries etc) and she knows what it is.

    God, Charlie Sheen is just as bad as Paris Hilton lol.
     
  20. Tulip

    Tulip Guest

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    Ok we will get Jesus Christ then.
     

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