International ME/CFS and FM Awareness Day Is On May 12, 2018
Thomas Hennessy, Jr., selected May 12th to be our international awareness day back in 1992. He knew that May 12th had also been the birthday of Florence Nightingale. She was the English army nurse who helped to found the Red Cross as well as the first school of nursing in the world.
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A disease with two faces? Re-naming ME/CFS

Discussion in 'Phoenix Rising Articles' started by persuasion, Nov 14, 2014.

  1. melamine

    melamine Senior Member

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    I like Ramsay's Disease a lot, and who cares if WHO frowns upon eponyms. Do they also frown upon prejudicial and highly misleading names? What I like about "Ramsay's" is that I wouldn't feel a need to explain anything unless anyone asked, and it doesn't exactly invite that in the way that a medical term does. Most of all, I like that it would allow me to keep a certain distance from being a "sick category" person and has a certain mystery about it. Those who are interested in learning more will ask or find another way of learning about it and those who aren't will accept it as a real condition all the same.
     
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  2. ukxmrv

    ukxmrv Senior Member

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    Maybe you might want to learn about ME before you start blogging on the topic.

    ME as a diagnosis was "alive and well" as a diagnosis in the 80's. There are still many patients from that time with an original pre-CFS diagnosis like myself still here. There are still patients from the Royal Free outbreak around.

    We had NHS and private doctors with an interest in the disease and access to some early treatments (like Amantadine). There was a VP1 test for entroviral infection through the NHS.

    I was a lot better off as an NHS patient in the 80's than I am now.
     
    Last edited: Dec 20, 2014
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  3. Aidan Walsh

    Aidan Walsh

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    Hold off on any name 'label' changes first find cause(s) then name it, could be possible this illness is linked to numerous others only manifesting differently in genetic factors cfs is very close to M.S. as well all these illnesses could be linked caused by infection trigger or multiple don't go with old school researchers even though they documented so much best to go with people who find cause or a treatment that works let's see how Dr. Coimbra's work from Sao Palo Brazil pans out in auto immune conditions if he is right calling these 'partial vitamin D deficiencies' he with his team including Dr. Michael Hollick would deserve name recognitions :) Merry Xmas
     
  4. persuasion

    persuasion visitingmrssmith.com

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    I agree. Ramsay's Disease doesn't have the word 'fatigue' in it, which must be good. The label, 'ME' is so stigmatised it's painful to use.
     
  5. persuasion

    persuasion visitingmrssmith.com

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    Unfortunately, I am a reluctant expert on ME since I've had it severely for 27 years.

    But you're right, I think ME was in usage in some parts of the UK and but perhaps not in all. I was diagnosed in the late 80s and it wasn't used for me nor anyone I knew. Perhaps it was a regional thing? I don't suppose it matters. The point remains the same. The label CFS is insulting. And the term 'ME' stinks so foul it's embarrassing to use.

    I don't feel I was better off in the 80s. The stigma and lack of acceptance and utter uselessness of the medical profession and false dawns on treatments are identical. Perhaps I am a tiny bit more hopeful that immuno-suppressants (used for so many other, often less disabling diseases) might come into play for us. But I'm not holding my breath.
     
  6. persuasion

    persuasion visitingmrssmith.com

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    See reply above.
     
  7. persuasion

    persuasion visitingmrssmith.com

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    You may be right - I think it was a regional thing. I was diagnosed in the 80s also but in London and I never heard the term ME until quite a few years later and I knew a lot of sufferers. It doesn't really matter now. ME has been contaminated. It's partly the fault of it being bound with CFS, but whether on its own or with CFS, it's not a name I ever feel comfortable using.
     
  8. caledonia

    caledonia

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    I have to revise my previous comment. New information has come to light and things are moving rapidly. Starting Oct. 1, 2015 the ICD-10-CM goes into effect. At this time ME will have it's own diagnostic code as a neurological disease (G93.3) separate from CFS. CFS and ME will be mutually exclusive - if you have one, you can't have the other.

    MEadvocacy.org has hired a public relations firm to help get ME officially recognized as a distinct disease (separate from CFS), along with a true ME definition (CCC, ICC or better), and then greatly increased funding for federal research.

    There is no such thing as ME/CFS or Ramsay's disease, CFIDS or whatever. There is only ME and CFS.

    Please read the blog post: http://www.meadvocacy.org/if_you_mean_m_e_just_say_m_e
     
    Last edited: Jan 31, 2015
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  9. Denise

    Denise Senior Member

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    And what happens with the IDC10-CM and insurance codes if the IOM report gives us a different name?
     
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  10. Bob

    Bob

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    Do you know what CFS will be coded under?
     
  11. Denise

    Denise Senior Member

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    Bob likes this.
  12. melamine

    melamine Senior Member

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    G93.3 is one of the ICD-10 codes I recently gave to my doctor to use, if she wished, for a referral she was going to make for me to see a neurologist.

    G93.3 is listed as "Postviral fatigue syndrome" Further description (see link) incorporates the seemingly alternative name, CFS. This would make some sense in educating doctors to the previous error.

    http://www.icd10data.com/ICD10CM/Codes/G00-G99/G89-G99/G93-/G93.3


     
  13. Bob

    Bob

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    Thanks Denise. It looks like CFS will be replaced with "chronic fatigue, unspecified" (R53.82).
     
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  14. Denise

    Denise Senior Member

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    Thanks @Bob. I thought that's what it indicated but wasn't sure. I appreciate a second set of eyes on that.

    I am still wondering what happens with the ICD10-CM codes if IOM comes out with a name other than cfs or ME. Anyone have thoughts on that?
     
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  15. Bob

    Bob

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    Interesting question. I doubt if there is an answer yet.
     
    Last edited: Jan 30, 2015
  16. alex3619

    alex3619 Senior Member

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    I don't think the name will change to anything good till we have a biomarker or cause. If anyone comes up with a new name that sticks without having a biomarker or cause it will be tainted within a year. Zero gain. The science will have to come first for a new name to have real value. At that point it will be the experts who give it to us, although it would be nice if we could be consulted for a change.
     
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  17. JPV

    JPV ɹǝqɯǝɯ ɹoıuǝs

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    People obsess way too much on what to call this illness and how people should refer to it. I could care less. I just want to get better.
     
  18. Mij

    Mij Senior Member

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    I found that telling people I have a medical condition is much much easier. For the most part, most don't want to know the details anyways.
     
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  19. Mimi

    Mimi Senior Member

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    Smart, Mij. Preserves dignity, too. Alex3619, you were exactly right. And what if it turns out there is no single cause, but a gradual overwhelm and then sudden breakdown of the immune system?
     
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