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Will the CAA support a name change to ME/CFS?

Discussion in 'Action Alerts and Advocacy' started by Roy S, Oct 14, 2010.

  1. Roy S

    Roy S former DC ME/CFS lobbyist

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  2. Roy S

    Roy S former DC ME/CFS lobbyist

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    I'd like to add that I spent time, effort and $2500 getting the original advisory committee that has morphed into this one mandated by law. I was a very strong supporter of the CAA then.
  3. Cloud

    Cloud Guest

    I'm sure the motion was seconded.....but was it voted upon? How will it be decided? I just don't see the CDC going for this...it would be an admission of being wrong (and wrong doing) for 25 years, if they signed onto this. They would have lots of explaining to do.

    Well, I sure hope it gains favor because Marc Iverson is correct in that the name CFS has been a huge part, if not the crux of the problem.
  4. George

    George waitin' fer rabbits

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    The motion was seconded and carried unanimously to recommend to the NIH that the name be ME/CFS. Buuuttttt (grins)

    The tiny little statement was made that the name would undergo a change shortly to something with neuro-immune in it. And how it was a shame to change it and then change it again butttttt, Dr. Jason said it was done in respect for the patient wishes, at which point Eleanor from NIH said that her e-mails indicated that the patients want ME dropped and the illness only referred to as CFS at which point someone asked if the e-mails were from the UK???? at which point I wondered if perhaps Eleanor might be suffering from severe brain fog and miss read, said e-mails.

    I do hope that CFIDS would go for using ME/CFS in all grants, and literature at this time. If it's true and we will get an official name change "shortly" (I think that may be a relative term) then they will have to consider how they want to deal with a different name sooner or later anyway since if their patient population name changes then as representatives of the population a name change would be in order. Ya know???
  5. Sasha

    Sasha Fine, thank you

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    I've come to the conclusion that every day the CFS name remains is another day of it contributing to our getting treated like dirt - a name change, even if it's only a stopgap change before the new one, can only help. Websites aren't that hard to edit for that kind of thing.

    I'm curious about the upcoming change to something with neuro-immune in it - fantastic - my doctor was amazed when I told him that my illness that he's known about all these years is classified as such by the WHO and if he doesn't know, Joe/Jane Public certainly don't. Who is pushing that idea? CFSAC itself? How is that kind of thing achieved? I thought it had to go to some international committee that met every two years or something (I read this when the renaming issue came up in relation to HGRV).
  6. Cloud

    Cloud Guest

    I agree George....I would love to see it changed, yesterday. I think almost any change would be good, especially a name including the neuro aspect, which is what ME does. I don't understand why Elanor would be getting a lot of email on keeping the name CFS. It's hard to believe these emails would have come from our patient community.....maybe they aren't. Or maybe she is confused.
  7. George

    George waitin' fer rabbits

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    I think it's as much about consensus in the beginning as anything else, But for money purposes a name has to be chosen for the IDC so that doctors and insurance companies can exchange money.

    The big thing was the NIH/NLB~~ group guy called it "ME/CFS" just as a matter of course in his presentation. I suspect Judy's influence. What do you think? (~~Sorry I just can't seem to keep the acronym for the working group in my head today.)
  8. ixchelkali

    ixchelkali Senior Member

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    Some, if not many, patients who have been diagnosed with myalgic encephalomyelitis don't want the name combined with CFS. And who can blame them? They believe that they are two separate entities, that ME is primarily neurological and that CFS is primarily a fatiguing disease. They have seen what happened in the UK when the two were merged and don't want that to happen here. The National Alliance for Myalgic Encephalomyelitis was pretty vociferous about that, though I think they may have softened their stance a bit since the discovery of XMRV.
  9. Cloud

    Cloud Guest

    I haven't crossed paths with that community for some time....thanks for reminding me. They do have a very valid point not wanting their diagnosis watered down, and that needs to be considered and respected. We all know that by Fukuda, there are a few million people diagnosed with CFS who basically just have some fatiging illness. But we also know that there are a bunch of us with real ME having the CFS diagnosis. Possibly we will need consensus on diagnostic criteria before a name change.....The CCD does a great job of separating the "Chronically Fatigued" from real ME/CFS.

    I've been meaning to ask you ixchelkali, is that name Incan?
  10. August59

    August59 Daughters High School Graduation

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    It's impossible that she is getting a lot of email from patients requesting that ME be dropped from the name. it might be that a lot of people from the CDC, pretending to be patients, saying that they want ME dropped from the name. What bothers me the most about her making that starment really displays complete ignorance on her part. I wish someone would have called her out on that one and requested that she produce those emails.
  11. Mark

    Mark Acting CEO

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    Thank you for explaining some more about this political stance ixchelkali. This issue and this stance has caused me quite some confusion in the past, but these days I am feeling more able to resolve those issues by identifying myself more firmly with "ME" rather than with "CFS". I now describe my illness as ME.

    I had previously considered that those patients who are more severely and permanently disabled than myself ought to have the monopoly on the term "ME" because of the greater severity of their condition. When they presented arguments such as the above, I sometimes felt - wrongly - that they were belittling my own serious non-psychological condition because I am in a fair degree of remission.

    But since then I have learned what Orthostatic Intolerance is - and that I have it; what a Romberg test is - and that I have 'passed' it; that my personality changes, loss of co-ordination, and memory loss, however intermittent they may be, are neurological symptoms; and that a range of neurological symptoms which I was previously unaware of are indeed characteristic of my own condition. I just hadn't ever seen these experiences as "neurological" before. I understand now that they are. It is in a way a frightening thing to accept.

    I hate the name "Chronic Fatigue Syndrome". It is a misnomer, and as its history clearly shows, it is correctly understood as a "slave name". I would love to see that name eradicated. I fully support any campaign to consign the term to the dustbin. It does indeed encourage people to say "Well I get tired too". Everybody thinks they understand tiredness. They don't think anybody else has more right than them to complain about it. It is a massively less significant symptom than persistent immune and neurological abnormalities.

    My remaining area of confusion concerns the larger army of people who we perhaps too easily tend to dismiss as "not us", and "maybe suffering from psychological conditions". I am not at all convinced that there really are a horde of people out there who have such a purported vague condition of perpetual fatigue that is distinct from depression and that is also distinct from ME. I continue to suspect that those people who have "CFS" rather than "ME" have either depression, or some other physical illness that may very well be related to ME. Perhaps many of those people are simply able to produce antibodies to XMRV, and thus avoid the most debilitating and persistent consequences.

    And it also seems important to note that even depression itself is also a physical illness with a biological basis. Whatever those people may have, I believe it is properly understood, in the modern age, as a physical illness. The concepts of "mental illness" and "psychological" or "psychiatric" conditions, are all stigmatising and misleading, and they all, in practice, tend to locate the problem in the patient's mind and behaviour rather than in physical factors.

    I would like to see that whole terminology consigned to the dustbin as well, and I am very concerned that when we discuss these factors, we should be very careful when drawing the line between ourselves and the "genuinely psychiatric" people with depression. In these arguments in the past, I have often - wrongly, I think - interpreted that I myself was being labelled by ME campaigners as suffering from a psychological condition, simply because I saw myself as "CFS" out of respect for the greater severity and persistence of "ME".

    So great care is needed when we draw this line. I hope the confusion I have outlined explains why I have in the past noted that "ME/CFS" feels like it draws a line through the middle of our community and separates us from each other, in a reality of "divide and rule". So, so often, the confusion over the different naming conventions causes us to speak to each other at cross purposes.

    I don't think I have any easy answers. Until the conditions are all better understood, it does remain complex and potentially arbitrary where we choose to draw the line. But I think there is an overwhelming consensus, amongst those I know personally and have met here, that "chronic fatigue" does not begin to describe us. If there really are people out there who have nothing but persistent fatigue, who lack all the other biological abnormalities, and who are happy to see themselves as "CFS" after learning about all these other factors, then perhaps we should leave the term "CFS" to them, if they want it.

    But in that case, then most of us here still need another name, then. And repositioning "CFS" as a different condition to what we all have, if that is now the goal of the psych lobby, does not excuse anybody in the CDC or elsewhere from their responsibility towards the millions of sick people they have neglected. If they have defined us all out of existence, they are still culpable for that. Perhaps, for the Americans, they could all just try to jump ship en masse and call themselves "M.E."? But who knows how that would be politically exploited?

    I fear that, whatever we do, the whole thing is just another cynical Catch-22. Can't register what you have: there is no box to tick. Can't research what's wrong with you, because nobody knows what's wrong with you. Can't even get started on investigating this question, because there's no evidence. If there is evidence, then you belong somewhere else...don't know where though. Can't offer you any support, because I don't know what's wrong with you. Can't offer you any benefit, because I can't prove you aren't just making it up. Can't offer you any more tests, because the official advice is that giving you tests just makes you think there's something wrong with you. Can't understand this test, because it isn't available under the NHS. Can't see anything wrong with you on my tests, because they don't include any of your abnormalities. On and on and on...with no progress, no interest, seemingly no concern at this perpetual stalemate.

    I have perhaps one positive suggestion which I'm increasingly warming to. Fibromyalgia, Multiple Chemical Sensitivity, Morgellon's, IBS, GWI, Lyme Disease...all these are our brothers and sisters, all are ideopathic conditions, all are serious and debilitating, all are quite likely related, and all should be studied under the same broad heading. We can all still preserve our identities within that broader understanding.

    PANDORA, Neuroendocrineimmune disease, the WPI for Neuro-Immune disease...all these point a way forward. Get together. Campaign together. Join forces. Increase our numbers and demand that we are all studied properly. Pool all that knowledge, co-operate, build a bigger movement and demand together that serious research begins at long last. Act Up together until we can no longer be ignored, because there are too many of us, and because we are saying loudly and publicly, together, that we have all had enough of being insulted by shrinks and ignored by everybody else.

    I still like "WTF?". But almost anything will do right now, for me, that is not the accursed "chronic fatigue".
  12. Sean

    Sean Senior Member

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    Now that just does not make any sense at all. In the 22 years since the 'CFS' label was first imposed I have NEVER heard of a single patient, let alone most of them, wanting ME dropped in favour of CFS.

    I loathe and dread the name CFS, and hold it in total contempt. It is a deliberate and dirty piece of propaganda, which has been very effective in deceiving the world as to the real nature of this disorder. The sooner they change the name, the better, IMHO. (Though I am prepared to wait a bit until they sort out the XMRV/MLV thing.)
  13. Desdinova

    Desdinova Senior Member

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    The CAA will stick to the old decree that changing the name at this point without knowing the full pathophysology or cause could / would have negative results. One thing is for sure you will never change the general public’s opinion about this disorder by keeping the name CFS. No amount of PR and Marketing Voodoo Spin will ever change this regardless of how much money you throw into it.

    In today’s rushed sensory overloaded society the average person has to take in, process and respond quickly to what they see and hear. And because of this we often end up basing our decisions and opinions on limited data and key visuals (seen and visualized), words (written and spoken) and other sensory stimuli that stands out consciously or subconsciously. And the word that stands out the most in the CFS Acronym is clearly Fatigue which triggers the usually negative responses thought or spoken “I’m tired too” etc.

    There are just something’s that people just can’t get past in their way of thinking or viewing. Little things that evoke some basic thought reaction some off handed response. And in my opinion no amount of explaining or education for the general public will get them to understand just what the Fatigue PWC experience is and feels like. It’s just one of those things that you would just have to experience not just firsthand but for a decent amount of time (at least six months maybe a year) to even begin to understand.

    Even with a name that is not only accepted, recognized and respected by everyone ME/CFS sufferers still have to deal with the dreaded “But you look ok” syndrome. Such responses “But you look ok” are also common with other disorders such as Lupus or MS that are accepted, recognized and largely respected by the general public.

    I had an aunt with Lupus who experienced this throughout most of her illness. And a coworker where I somehow manage to work at (and have known for years) who was recently diagnosed with MS is experiencing this almost every day. Receiving scorn by people who believe that she can’t possible have MS because (to quote another coworker) “It’s a serious disease” because she doesn’t look sick therefore she can’t be sick “She makes me sick”. But at least with a name that is readily accepted, recognized and respected by the public at large PWC’s will be freed from one of two largest albatrosses that have hung around their necks.
  14. Ember

    Ember Senior Member

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  15. suezen

    suezen

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    Who cares if the CAA will support a name change to ME?CFS. They don't seem too relevant any more.
  16. Sing

    Sing Senior Member

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    ME/CFS or CFS/ME but not CFS

    Some organizations have made this decision already. For instance, there is the IACFS-ME (www.iacfs-me.org), which lists the next conference they are backing this Sunday, Oct. 17, as the ME-CFS Conference, in Eatontown, NJ.

    And the Canadian Consensus Definition of 2003 calls what we have as ME-CFS. The textbook of 1992 edited by Dr. Byron Hyde, Dr. Jay Goldstein and Dr. Paul Levine is entitled, The Clinical and Scientific Basis of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, and the MEFMAction Network of Canada (www.mefmaction.net) also continues to hold to ME/CFS too for their conference in 2011 in Ottawa.
  17. George

    George waitin' fer rabbits

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    Plus the article got it wrong the recommend name change was for ME/CFS.
  18. shiso

    shiso Senior Member

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    Good news about the committee recommending the ME/CFS name (I missed that part). I agree ANYTHING is better than CFS which people (even the experts/good guys) often shorten to "chronic fatigue."

    I thought it was great that the NIH guy taking over for Eleonor Hanna)/new head of the "Trans-NIH Working Group for CFS" used "ME/CFS" in referring to the disease during his CFSAC presentation yesterday.

    I'm being optimistic (just for the sake it) thinking that if the guy newly in charge of this working group at NIH has taken it upon himself to call it ME/CFS, that's a good sign. If the government starts using it, it won't matter if CAA supports it or not.
  19. Mark

    Mark Acting CEO

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    I agree that ME/CFS is a step forward for the US, compared to not having ME at all.

    If the debate does start to twist back to CFS/ME, then "ME/CFS / CFS/ME" would be a fair compromise...
  20. Dolphin

    Dolphin Senior Member

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    (To nobody in particular) Some of the CBT school in the UK sometimes use CFS/ME (although generally not too much in research papers) but never or virtually never ME/CFS. CFS/ME makes it easier to knock off the M.E. So I recommend whenever possible to use ME/CFS.

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