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CDC has alternative therapies listed as suitable treatments on their website

Discussion in 'General ME/CFS News' started by taniaaust1, Dec 6, 2011.

  1. taniaaust1

    taniaaust1 Senior Member

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    I havent had a read though of the CDC CFS stuff for a while but are finding there are positive changes since I last read it (which was some time ago).

    One thing which i was was really surprised about is the CDC treatment page. http://www.cdc.gov/cfs/general/treatment/index.html

    Some quotes which amazed me to see them be saying are

    "One key to managing CFS is working with health care professionals to create an individualized treatment program. This program should be based on a combination of therapies, for example traditional and alternative"

    Wow they are endorsing us using alternative therapies as well now.

    "Living with chronic fatigue syndrome can be difficult. Like other debilitating chronic illnesses, CFS can have a devastating impact on daily life, requiring patients to make significant lifestyle changes and adapt to a series of new limitations."

    Sounds like they are accepting now it isnt just a physiological illness with recognising that we need to adapt to new limitations.

    "Treatment Options
    There are many different types of treatment and management tools available for Chronic Fatigue Syndrome. These include:

    Professional Counseling
    Cognitive Behavioral Therapy (CBT)
    Graded Exercise Therapy (GET)
    Symptomatic Treatment
    Alternative Therapies
    Support Groups
    Pharmacologic Therapy
    Sleep Hygiene
    Pain Therapy
    Orthostatic Instability Treatment
    Antidepressants"

    Wow.. that is such a change from just seeing the useless CBT and GET listed and nothing else. Finally the CDC seem to be getting it.


    On http://www.cdc.gov/cfs/general/diagnosis/testing.html they say
    " Physiological testing such as sleep studies, exercise testing (including VO2 max), or tilt table testing are appropriate to address specific questions, often in consultation with a specialist."

    I wish I'd known that earlier.. I may of been able to convince my specialist to get me tilt table tested years ago and not been stuck mostly housebound due to the POTS.

    On http://www.cdc.gov/cfs/pdf/cfs-toolkit.pdf If anyone has a doctor who really follows the psych veiws and insiststhat CFS cases need to be on antidepressants. CDC site has the following

    "Treat clinical depression only. People with CFS may show signs of depression, but not have depression" "Use caution in prescribing/taking antidepressants. Some antidepressants may make CFS symptoms worst or cause side effects."


    Im now looking forward to reading the rest of their CFS info to see in what other ways the site has been changed.
    ahimsa likes this.
  2. Enid

    Enid Senior Member

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    Very interesting tania - coming too slowly now. (though CBT and GET is an anathema to me).
    justinreilly likes this.
  3. Valentijn

    Valentijn Activity Level: 3

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    I'd like it a lot better without CBT and GET on there, and more mention of treatments that work, but it's a step in the right direction.
    ahimsa, justinreilly and taniaaust1 like this.
  4. taniaaust1

    taniaaust1 Senior Member

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    Can someone please give me the link of the CDC pages which make it clear that ME and CFS are two different illnesses. That is what i was at their site going throu their pages looking for but I cant now find it. When they recently updated, did they take that part out of the differential diagnoses where I saw it before???
  5. taniaaust1

    taniaaust1 Senior Member

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    One thing I liked is that at some parts of it now they listed supportive counselling to help cope with dealing with the illness and what this illness does, before mentioning CBT or GET as treatments. (I've love to see them listed last!).

    I myself have supportive counselling to help me cope with all the losses this illness causes etc (need somewhere to let my doctor anger out too!!). So its great that is listed even if it only helps emotionally and not all the physical symptoms.
  6. eric_s

    eric_s Senior Member

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    To be honest, i think the "Treatment Options" part is still a catastrophy, especially the order in which they have put the different approaches. Also it would probably be a good idea to make a difference between treatments and things that can help to cope with the illness there.

    The rest seems to be a step in the right direction.

    I don't know if the CDC says anywhere that ME and CFS are two different illnesses. I think i remember that a CDC official was quoted as saying that their recommendations are for CFS and not for ME, but i'm not sure anymore and i don't know if that meant a lot. Maybe that was just something that person said without thinking about it a lot and didn't reflect the CDC's official position. Maybe somebody else has the link.

    There are many different definitions for ME and CFS out there and there's no doubt that they produce very different cohorts, but i don't know if it makes sense to want to separate ME from CFS. I know many people are very much in favour of that though. I think it would be better to abandon the bad criteria like Oxford or the empirical CDC ones altogether or use another term like "chronic fatigue" for what they describe. If i remember correctly, in the ICC for ME the authors themselves say that the new criteria are an attempt to better define the illness that was called CFS in the other criteria.
  7. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Yes, making some progress. However, CBT and GET should be last, or even better, should be with professional counseling under a heading of "Coping Aids"

    Tina
  8. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Tina, I agree that CBT should be under 'coping aids for any disease.' And actually GET should not be mentioned.

    The joint CDC/CAA CME that CDC has on its website says that ME and CFIDS are incorrect terms for CFS since ME displays neurological signs and symptoms and the term "CFIDS" supposes immune dysfunction. This from the *CFIDS* Association!! :confused::(:(:confused:
    taniaaust1 likes this.
  9. Andrew

    Andrew Senior Member

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    The last time I looked (a few weeks ago) GET and CBT were not under any categories. What they had done is elevate them to the same level as main headings. In other words, they were headlining them, instead of tucking them away in categories.

    Anyway, it looks like the recently added some stuff, but are also misdirecting via omission. A VO2 max test is useless unless it is done two days in a row. One can't test for post exertion problems without doing a post test. Yet, the CDC neglects to mention this.
    taniaaust1 likes this.
  10. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    Doctors should not go by lists. There are things that no one needs there. Glad I don't need that list.
  11. SOC

    SOC Moderator and Senior Member

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    Okay, we can't get antivirals, immune modulators, or other genuinely useful treatments listed by the CDC because "there isn't enough research to support it", clinical evidence being far from sufficient.

    So where is the "research to support it" for ME/CFS for these "treatments" they're willing to list? I agree that some of these things can be helpful to some of us, but they don't have the research behind them (for ME/CFS) any more than antivirals, immune modulators, Ampligen, etc, etc. So what gives?

  12. rlc

    rlc Senior Member

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    Hi Tania The name myalgic encephalomyelitis (ME) was coined in the 1950s to clarify well-documented outbreaks of disease; however, ME is accompanied by neurologic and muscular signs and has a case definition distinct from that of CFS.

    can be found at the bottom of this page http://www.cdc.gov/cfs/education/wb1032/chapter1-1.html
  13. Desdinova

    Desdinova Senior Member

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    Just go to PubMed and do a search Weaselly and co should have at least 1/2 of the papers that show up when a search is preformed. That's the research to support the majority of the list. It's also what helps ensures that their will never be enough so called "research to support" many of the things we would like to see listed.
    justinreilly and taniaaust1 like this.
  14. eric_s

    eric_s Senior Member

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    Thanks, Rlc. What would be interesting to know is if the CDC see ME as an exclusionary criterion for CFS then. If i look at the ICC for ME, they don't seem to be very different from the CCC, so i don't think that would make a lot of sense, at least not for ICC-ME. Probably the CDC think ME is incorrectly used there...

    With regards to their statement, i think there are enough studies that have shown neurological abnormalities in "CFS" and cognitive impairments are one important symptom. Also i don't know if there even are people with "CFS" who don't complain about muscle weakness. Many probably have mitochondrial dysfunction, which affects the muscles.
  15. taniaaust1

    taniaaust1 Senior Member

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    Thank you Ric :) . Glad to see it hasnt been removed.

    People up to it should email the CDC and ask them what the ME case definition is and try to force them to put that definition onto their website. That certainly would then help to clear up the confusion people (esp doctors) have between the two.
  16. eric_s

    eric_s Senior Member

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    I think they are included in "Pharmacologic Therapy"
  17. taniaaust1

    taniaaust1 Senior Member

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    Thanks, the CDC has always said that.

    Good to hear that the CFIDS assoc is supporting ME being different too. Hopefully we can go back to things before the CDC caused confusion and messed everything up by misdiagnosing at Lake Tahoe.
  18. taniaaust1

    taniaaust1 Senior Member

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    Yes the CDC does see ME as a exclusionary criteria for CFS. It used to be listed as a differential diagnoses and was originally mentioned in 3 different places on their website but when they changed there site quite a time ago... a couple of the ME references all showing it was different in various ways were removed.

    With it there (they only need to state it once) .. if anyone dies following the CDC advice eg GET.. they could say that person had ME and hence should not have been doing that as they dont recommend GET for ME.

    So people could never blame and sue them if they are following the "CFS" info by CDC when they actually have ME (so it makes sense legally that one of the ME references got left at their website). That being there just the once on their site protects the CDC .
    (Im sure it isnt just listed there the once nowdays for patient benefit. If they truely wanted to help people they would describe ME properly and give it its own pages not hide it at their site in a place that even when looking for it, its very hard to find).


    How the CDC is fooling the ME community about their views (allowing most to think they see it as the same thing) and continues to do so, really bothers me. We dont need CFS removed but rather need ME clearly defined by them so we can show their page to our doctors etc etc and hence get our diagnoses just changed. Nearly all the CFS studies havent been properly done due to all the mix of patients groups watering results down. We need ME studies.

    If we just get the name CFS changed to ME .. all those bad studies will come too (including the Wessely ones with his patient group, a group in which those who have actual physical findings from ME are discluded from his CFS studies). It needs to be made clear they are separate and always have been and hence we should be having ME studies done.

    Take care
  19. Valentijn

    Valentijn Activity Level: 3

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    How can ME be an exclusionary diagnosis for CFS according to the CDC, when the CDC doesn't acknowledge the existence of ME? Or has that changed?

    "Having something-that-doesn't-exist means you don't have CFS. Congratulations!" ???
  20. eric_s

    eric_s Senior Member

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    They do acknowledge the existence of ME, they mention it at the bottom of this page: http://www.cdc.gov/cfs/education/wb1032/chapter1-1.html

    To me it sounds as if they say ME is something that occurred a couple of times in the past, in outbreaks, but it's not the same thing that so many people all around the world have now. It would indeed be interesting if they provided diagnostic criteria for ME, because i'm pretty sure a number of people would fit it.

    The ME they are talking about must be something different than what the ICC describe, because if it was the same, there would not be many people left with CFS according to the Fukuda criteria or ME/CFS according to the CCC, if ME was exclusionary for CFS.

    So it looks as if we have even more confusion now, people don't agree about what CFS is and people don't agree about what ME is...

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