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Rheumatology and ME/CFS?

Discussion in 'Institute of Medicine (IOM) Government Contract' started by Andrew, Jan 23, 2014.

  1. Andrew

    Andrew Senior Member

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    The HHS rhetoric gives the impression that ME/CFS is currently handled by genral practitioners. As far as I know CFS is actually supposed to be handled by rheumatologists. Whether we agree that rheumatologists should handle this or not, the fact remains that the HHS is trying to maneuver this illness so it is not in the hands of specialists, and therefore needs a simple criteria. As part of my effort to discredit the HHS, this is a powerful point I can make. But my only source for this is what every doctor tells me who they are told to refer to. And a few more I cannot find now.

    Do any of you know where it is established that rheumatologists are the specialty that handles CFS.
     
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  2. SOC

    SOC Senior Member

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    IIRC, during CFSAC meetings Dr Whatsherface, the head of the committee (sorry, cognitive dysfunction is playing up) has been quite clear that it is GPs that HHS is expecting to handle "CFS".
     
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  3. Denise

    Denise Senior Member

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    One of the (many) problems we have is that ME does NOT have a specialty home with rheumatology or neurology or anywhere else....
    SOC, I think you are correct that the CFSAC DFO (Nancy Lee) has said that DHHS expects ME to be handled by GPs.
    My two cents --- If, as CDC's Unger says, the CCC is too complicated for GPs, patients are even more complicated --- so there is no way GPs (except for unusual individuals) can handle ME.
     
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  4. SOC

    SOC Senior Member

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    Thank you, that's indeed who I meant. :)
     
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  5. Nielk

    Nielk

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    I would rather think that like AIDS, it should be infectious disease specialists.
     
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  6. minkeygirl

    minkeygirl Narcissism = lack of self awareness

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    I know this isn't necessarily part of this conversation, but I saw a rheumotologist today for my psoriasis and she is referring me to The Chief of Immunolgy at UCI because my immune system is whacked. She is the first doctor to look at by labs and see that something was wrong. My GP said all my labs were normal.

    She did not understand the viral component. She said "everyone is exposed to CMV" and other viruses. I said I've tested positive for years for viruses. That got her attention.

    It took me years to get someone to look at my labs and see there was a problem and do something about it.
     
  7. Andrew

    Andrew Senior Member

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    The few GPs I've spoken to about this said they refer to rheumatologists. They must be getting this some place.
     
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  8. Gemini

    Gemini Senior Member

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    A while back the FDA reorganized & assigned ME/CFS to their Rheumatology Division. They announced the change at a CFSAC meeting but I don't remember if they gave a reason for choosing that department.
     
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  9. Purple

    Purple Bundle of purpliness

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    It may be their 'instinct' or training that makes them look at ME and think it appears like something a rheumatologist would know about and therefore a referral to a rheumatologist makes sense to them.
     
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  10. minkeygirl

    minkeygirl Narcissism = lack of self awareness

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    In Cleveland in 2000 the only guy anyone was sent to was a Rheumotologist. Don't know why.
     
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  11. SOC

    SOC Senior Member

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    Yes. They can't distinguish ME/CFS from fibromyalgia. Not very long ago GPs were being told CFS and fibro were the same thing. Probably still are in many places. Fibromyalgia IS currently in the domain of rheumies.

    I'll bet if you check with the rheumies, they'll tell you they don't treat ME/CFS. I've heard of plenty of people being referred (for ME/CFS) by their GP to a rheumy only to be told by the rheumy that they don't treat ME/CFS. And the patient got charged for it. :rolleyes:
     
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  12. Hope123

    Hope123 Senior Member

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    The few studies out on who US physicians refer to for CFS show that if they refer patients to anyone, it's usually physical therapy, psychological/ psychiatric-oriented groups and sometimes, infectious disease/ neurology/ or rheumatology. Rheumatology referrals likely happen not because they have any specific knowledge of ME/CFS but because

    -- A lot of ME/CFS patients are younger women and autoimmune diseases, which have chronic fatigue as an early presenting symptom, need to be ruled out

    -- Some patient have FM and some rheumatologists manage that condition or are interested in it

    -- Some physicians think FM and CFS are the same illness (although there is evidence pointing to the fact they are not) and so per prior point, refer to Rheum

    -- Some Rheums have additional training in allergy/ immunology

    In the whole scheme of things, if ME/CFS turns out to have major autoimmune components, Rheum is not a bad specialty to have take care of us because they do deal with many autoimmune conditions (lupus, rheumatoid arthritis, autoimmune vascular conditions, Sjogren's, etc.) and are familiar with immunomodulating drugs like rituximab.

    However, no patient should ever be without a good generalist - whether family medicine/ pediatrics/ internal medicine, etc. Few specialists will want to take on all medical issues of a patient outside of their specialty and someone needs to coordinate care. Many patients seen by specialists for a specific medical condition continue to have a generalists.

    A good generalist also makes sure the specialists are talking to one another, advocates for the patient's overall care (e.g. help prioritize which issues get handle first, address preventive health, etc.), and assures medications/ treatments don't clash. Part of my bias is I'm a generalist at heart (although I also have a specialty background) and in the US, generalists don't get enough credit from anyone praise-wise or money-wise for what they do. Insurance companies don't pay or pay much for the activities generalists do and patients need like spending time explaining things, talking to families, talking to multiple specialists to coordinate care, etc. In fact, multiple reports conclude that the US is behind other countries on many health indicators because of the lack of and continuing decline of generalists. These forces are also behind the rise of concierge medicine in the US where some generalists are now charging patients extra for these services.
     
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  13. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    @Hope123, are you a physician? I agree with all your points.

    @Andrew, as I said, I agree with everything Hope123 said. I'd also add that Rheumatologists specializing in Fibro sometimes develop a side specialty in ME since fibro and ME are so similar, noone else wants to treat us and ME patients get referred to them.

    The only thing about who's supposed to treat us I've ever heard is that we were supposed to be in neurology bc of WHO ICD classification. And that Unger thinks we should be under primary care doctors.

    I think we should be under internal medicine since we are a multi-system disease (not any other primary care doctors- i don't think they can handle it by and large) and second choice neurology or rheumatology.
     
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  14. jimbob

    jimbob ME/CFS84-XMRV+

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    I see a Rheumy, but she knows nothing about ME/CFS, only Fibro. Internal medicine Dr. the best way to go, I just can't find one anywhere near me who sees ME/CFS and that includes MUSC in Charelston, S.C.! In the eighties all the diagnosing and treatment were being done by Infectious desease Doctors. In the northeast there was Kamaroff and the late Dr. Nelson Gantz, who diagnosed me within a few minutes.
     
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  15. Andrew

    Andrew Senior Member

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    Just to clarify. I never said Rheumatologists know anything about CFS or will attempt to treat CFS.

    I will be seeing my PCP on Thursday so I'll ask her where she got that guideline.
     
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  16. Izola

    Izola Senior Member

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    Absolutely, ME+ sh/be handled by an infectious disease specialist. To add to that mix, some of us are experiencing crumbling bones. So, (watch this effort to spell) Rheumatologists (yaay, I did it) should be an adjunct doctor.
     
  17. SOC

    SOC Senior Member

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    Immunologists would be good, too.
     
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  18. Izola

    Izola Senior Member

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    Brain cramps, couidn't think of that one. Immunology Yes. If only we all had a dozen brains apiece. Thanks SOC for having presence of mind.
     
  19. SOC

    SOC Senior Member

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    Feels like I only have a tenth of a brain these days. :( Glad my one tenth was helpful in this case. ;)
     
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  20. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Yes, immunologists and infectious disease would be good too. Any relevant specialty, just not primary care practitioners generally and irrelevant specialties (like psychiatry).
     

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