Looking Ahead to Change: Little by Little
I don't make New Year's Resolutions. I don't think I ever really did, but the last decade or two would have been enough to stifle that impulse. I've just been too aware that I don't have that much control over what happens in my life.
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My new year's resolution 2012

Discussion in 'Action Alerts and Advocacy' started by drjohn, Dec 28, 2011.

  1. drjohn

    drjohn Senior Member

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    Letter, Re: David Cameron's pledge to protect NHS clouded by emerging reality of cuts (Guardian, 27 December 2011)

    PERMISSION TO FORWARD AND RE-POST ON OTHER FORUMS, SOCIAL NETWORKING SITES AND USE IN NEWSLETTERS. PLEASE TWEET AND RE-TWEET ON TWITTER.

    Guardian Letters.
    Cc: Denis Campbell, Health Correspondent.

    I have made a new year's resolution for 2012, both as an individual sufferer of M.E. (Myalgic Encephalomyelitis) since 1988 and as a Research Psychologist, who founded the M.E. Community Trust.org, which represents people affected by this dreadfully disabling neurological illness. It is to contact everyone (whether individual, doctor, researcher, journalist), who publishes that M.E. is "also known as," or is to be taken as identical, synonymous, or interchangeable with Chronic Fatigue Syndrome, CFS (David Cameron's pledge to protect NHS clouded by emerging reality of cuts, Guardian, 27 December 2011 - http://www.guardian.co.uk/society/2011/dec/27/david-cameron-nhs-cuts?newsfeed=true) and to invite them either to justify this assertion, or withdraw it. This is not a fussy or pedantic request but of crucial importance, since I believe it is impeding progress in the understanding of and recovery for, not only people with M.E. but patients with other conditions caught up in this indiscriminate CFS bundle. Quite simply, researchers using several different criteria of CFS - which even their advocates admit are "heterogeneous", "ubiquitous" and "nebulous" - are not comparing like with like and conclusions drawn from studies of people with various CFS conditions - for example, that Cognitive Behaviour Therapy (CBT) is helpful or that Graded Exercise Therapy (GET) is beneficial - may not be merely ineffective but actually harmful for M.E. sufferers.

    If they believe that CFS and M.E. are the same and that CFS is the preferred term, they should have no difficulty in dissociating CFS from M.E. If they are determined to retain M.E. either as an independent name or conjoined as CFS/ME, they should explain why and define what they mean by the terms, as they use them. I hope that, of all the options they have, they will not rudely ignore this request, as though it had not been made or seen by them, yet continue to conduct invalid and unreliable research, or offer treatments that have been keeping people ill for decades.

    You are amongst the first handful, Denis, to receive such an invitation, even before the new year begins. M.E. sufferers will be interested to see who will follow, whether the invitations are even addressed and, if they are, what will be the responses. We shall keep a count and let you all know in 2013.

    Yours sincerely
    drjohngreensmith@mecommunitytrust. org
    Dr John H Greensmith
    ME Community Trust. org
     
  2. gregf

    gregf Senior Member

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    Sydney Australia
    Brilliant, Dr. John, brilliant.

    If only more patients realised this.
     
  3. maryb

    maryb iherb code TAK122

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    As always drjohn, a wonderful letter, my utmost respect and admiration for you and what you do for us all.
     
  4. Enid

    Enid Senior Member

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    Another marvellous letter - thank you drjohn.
     
  5. Well done, John!

    But I fear that this will keep you busy all days of the year...
     
  6. Nielk

    Nielk

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    Will the "REAL" illness please stand up!
    May it receive a "PROPER NAME"!

    Thanks Dr. John
     
  7. Enid

    Enid Senior Member

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    I quite agree Nielk !.
     
  8. Ember

    Ember Senior Member

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    A proper name?" One more appealing to US insurance companies perhaps? Methinks they have the name they want already. What would it take for them to recognize and cover ME?
     
  9. Nielk

    Nielk

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    It's a good question. I, naively thought that when the new ICC came out, everyone would adapt at as the new criteria and name for our illness. I was authored and executed by so many experts in the field, worldwide.
    It seems now though, that it's just a piece of paper. Where is the power behind it? Why don't the US health organizations take note of it?
     
  10. Ember

    Ember Senior Member

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    US Health Organizations like the CDC?

    I've wondered before about the relationship between the CDC and the US insurance companies. When it comes to taking note of the ME-ICC, Dr. Unger is determined to take her own sweet time. She says that the CDC will need at least a year to collect data from their clinical colleagues and possibly engage "people that do not actually have contracts" to discuss a process for revisiting CFS-Fukuda. Any meeting of experts will then be prefaced by committees and pre-meetings, posting and comments, discussion and dialogue because everybody needs to have a voice in what the final product is.

    It's a joke at our expense, and the US advocacy organizations sit silently by (as do the patients). Their complicity in this charade is a crying shame!
     
  11. Nielk

    Nielk

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    It is a crying shame. What do you think us patients can do about it?
     
  12. Ember

    Ember Senior Member

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  13. Rename your own organizations or start new ones if you can't, and don't use the term CFS anymore.
     
    *GG* likes this.
  14. floydguy

    floydguy Senior Member

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    Personally, I think one option is to focus on and support outstanding private groups that don't depend on CDC/NIH funding. If these private groups put out high quality, defensible research the CDC will have no choice but to follow along. Trying to play ball with the CDC is a waste of time and a distraction in my opinion.

    The only question I have of Unger et al is do they think they are advancing science at all (can they really believe this???) or are they just taking up space until they retire? Are they the equivalent of the legislator operating out of the broom closet?
     
    *GG* likes this.
  15. Ember

    Ember Senior Member

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    In the meantime, who determines whether or not US insurance companies recognize and cover ME?
     
  16. Boule de feu

    Boule de feu Senior Member

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    It seems quite reasonable for someone who lives in the UK but it would not work for us in Canada.
    ME does not exist here. It's known only by CFS. So, how would you differentiate us (I am a very severe ME sufferer) from the CFS crowd?
    In the meantine, I'm happy to say that I suffer from ME/CFS. It makes it more official.
     
  17. Ember

    Ember Senior Member

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    This isn't true of my experience. I've seen four doctors since last summer, all of whom refer to my illness as ME. Admittedly, I had to provide a copy of the ME-ICC to my naturopath, but he was teaching it to his students by September.

    Three of my friends consider themselves to be disabled with ME. So I was a little surprised to hear last month that the new Complex Chronic Disease Clinic would be using the Canadian Consensus Criteria for now. I understand that the CCC has its protocols written already. But in terms of educating the medical community, using ME/CFS seems regressive.
     

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