1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
August 8th - What is the one thing about suffering with severe ME that the world needs to know?
Andrew Gladman brings our coverage of the Understanding & Remembrance Day for Severe ME, airing the voice of patients ...
Discuss the article on the Forums.

Recovery rates

Discussion in 'General ME/CFS Discussion' started by Fuschia, Jun 12, 2013.

  1. Fuschia

    Fuschia

    Messages:
    28
    Likes:
    30
    There seems to be a lot of debate over what the ME/CFS full recovery rates are. As I'm sure you're all aware, studies seem to show it as low as 5%, though that could be because they're recruiting participants from the sickest patients. Since falling ill, I've had a ton of people coming up to me that say they've had friends or relatives with m.e., who are now back to 100%. So what's going on? Did those people have "true" m.e. in the first place, I noticed a lot say they had recovered within a few years but they were definitely ill and it was definitely after a viral infection. I was wondering if any of you out there found the same thing. And if you asked your doctors, what did they say about recovery rates?
  2. xchocoholic

    xchocoholic Senior Member

    Messages:
    2,767
    Likes:
    1,440
    Florida
  3. Fuschia

    Fuschia

    Messages:
    28
    Likes:
    30
    That link to the CFS roadmap from the Google site is great, thanks for throwing it my way. Funny in all my google trawling I never came across it! Trying to get an appointment at one of the "big name" CFS places at the mo, so knowing the tests is helpful. Tx
    For anyone else it's

    https://sites.google.com/site/cfstestingandtreatmentroadmap/
  4. xchocoholic

    xchocoholic Senior Member

    Messages:
    2,767
    Likes:
    1,440
    Florida
    Hi again,

    FWIW, I just gave you that link so you could see how many possible causes and treatments there are for CFS. Therefore, no stats on recovery of CFS can be accurate.

    As far as treating, I've had luck with eliminating my food and chemical intolerances. Mostly gluten tho as I'm gluten intolerant with celiac disease, Hashimoto's, gluten ataxia (resolved via diet), etc. I see an integrative doc.

    I'm not up on what antivirals, parasite meds and antibiotics may help.

    Good luck with your treatment ... X
  5. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    7,219
    Likes:
    4,516
    australia (brisbane)
    I think the longer one has been ill for the more chance one has possible neurological damage. I feel that at this stage i have mostly cleared the infections. Energy is ok but still have symptoms like insomnia, memory recall issues and still some pem but they have improved alot. Maybe with more time these things will improve. Im at an 8 to a 9 currently.
    merylg and Sushi like this.
  6. John H Wolfe

    John H Wolfe Senior Member

    Messages:
    220
    Likes:
    36
    London
    Inclined to agree, unfortunately - some also say that speed/chances of recovery is also a negative function of age (true of many illnesses), again unfortunately

    Also not sure how many PWME vs. other illnesses associated with autoimmunity/chronic fatigue (and sometimes mis-labelled confused with 'CFS' etc) recover fully and stay near enough 100%

    Always got the sense from the online/offline community that it's more likely that PWME go into remission but that their health remains somewhat 'on edge', possibly indefinitely - due perhaps to things like unresolved complications, residual damage/shrinkage/amyloidic effects, and some remnant immunodysfunction/autoimmunity and the activity of latent viruses
    heapsreal likes this.
  7. WillowJ

    WillowJ Senior Member

    Messages:
    3,023
    Likes:
    2,542
    WA, USA
    If you look at the studies who look at people who get infections, many of them will meet the criteria for CFS after 6 months, fewer after 9 months, and so on. In time, only about 10% (average) will stay ill. This is without any treatment at all.

    Of these 10% who stayed ill, a few (10% or less) will overall improve, a few will overall get worse, and many will have a relapsing/remitting course. again, this is without treatment.

    The recovery rates are affected by inclusion criteria: loose criteria such as Oxford (which is basically anyone with fatigue that can't be diagnosed in a single visit with a GP) has higher recovery rates while criteria with more symptoms have lower rates (Holmes, for instance, which requires physical symptoms like sore throat, got lower rates).

    Additionally, some people self-diagnose with CFS or ME, and (as mentioned already) doctors may mis-diagnose. Some of these people may have other diseases, some of which may relapse or recover or respond to various treatments or lifestyle changes which may not be appropriate or particularly efficacious for ME/CFS.
    Valentijn, John H Wolfe and biophile like this.
  8. John H Wolfe

    John H Wolfe Senior Member

    Messages:
    220
    Likes:
    36
    London
    As I understand it, approximately 50% of GP diagnoses of CFS were later found by specialists to relate to be manifest sleep/psychiatric and other disorders in a study. We all know I'm sure what it can be like pushing a GP for some kind of diagnosis so that figure would probably be a lot higher if those who encountered things like lasting fatigue all pushed their GPs for diagnosis. Unfortunately this does cloud the recovery from CFS (let alone ME/CFS) picture quite considerably
  9. Tito

    Tito Senior Member

    Messages:
    300
    Likes:
    406
    As mentioned before, in summary,
    1. Many people wrongly self-diagnose.
    2. Among those diagnosed by a GP, many do not have CFS/ME. I remember a study mentioning a whopping 50%+ mis-diagnosis by GPs.
    3. Among those properly diagnosed, when you ask those who say they are 'fully cured' if they work, they reply, "No, I can't do that anymore". "Do you go out" "No, I am limited to a monthly visit to friends for a maximum of 90 minutes on a good day" "Do you clean your house or cook?" "No, I leave that to my husband" etc. you've got the (CBT) picture...
    4. Among those properly diagnosed who can work again, you have a substantial number of them who will say they are cured because they do not know/remember how it is not being ill (for example, they fell ill as a teenager and they do not know what life is as a healthy adult). They will sleep 10 hours a day and drag themself to work, but that is the maximum they can do.
    5. You finally have those who are functionally better enough to have a truly 'normal' life.
    My personal estimate is that category 5 makes 2% of the 'tons of people who have recovered from ME'.

See more popular forum discussions.

Share This Page