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!
9th Invest in ME International ME Conference, 2014 - Part 2: Pathogens and the Gut
Mark Berry continues his series of articles on the 9th Invest in ME International ME Conference in London, with the emphasis shifting from autoimmunity to pathogens and the gut ...
Discuss the article on the Forums.

Defining recovery in chronic fatigue syndrome: a critical review

Discussion in 'Latest ME/CFS Research' started by Firestormm, May 6, 2014.

  1. user9876

    user9876 Senior Member

    Messages:
    796
    Likes:
    1,963
    I think recovery suggests getting better where as a successful treatment suggests that the treatment works as expected. A treatment may make no claims of recovery but just suppress or reduce certain symptoms if this works it can be classed as successful even if it doesn't lead to recovery.

    I view remission as an admission that the disease mechanism is suppressed but could come back. Oncologists will often talk of remission as they know there is a chance that cancer will reoccur over the next few years for someone who they have treated and who appears clear of the disease. Without a good understanding of disease mechanism or massive long term follow up I would have thought remission is a more honest phrase than recovered.
     
    Dolphin and Valentijn like this.
  2. lansbergen

    lansbergen Senior Member

    Messages:
    1,161
    Likes:
    594
    And that king can be the difference between life and death
     
  3. manna

    manna Senior Member

    Messages:
    368
    Likes:
    257
    i don't thoink you understand the point. I'm saying that less symptons can occur even if you're actually worse.

    yes you can make folk toxic so they don't die of cancer or hiv so quickly and if more "life" (upright is life to some people...walking dead to others), without recovery, is your goal, then cool, by all means. but we're not dealing with life and death so closely here are we? then of course over 100,000 die, unnecessarily (toxic reactions), due to docotor administered medications each year in the united states...whilst they're obviously trying to reduce symptons...so that way of looking at things is clearly mortally dangerous.
     
  4. lansbergen

    lansbergen Senior Member

    Messages:
    1,161
    Likes:
    594
    Ain't we?? Well, I was. Without the immune modulator I would have been long dead. And what about all the patients that died????
     
    Wildcat likes this.
  5. manna

    manna Senior Member

    Messages:
    368
    Likes:
    257
    if you'd have been long dead minus the immodulator then that condition must be superfluous to me/cfs. and, though this may grate, just because you never found a way to deal with it without meds, doesn't mean it can't be. in fact i would say there's always a way...i mean all meds are toxic forming right? so ultimately they must hinder.

    i believe the famous motorcyclist, Barry Sheen, died of cancer that was preceeded by me/cfs. personally i think the me/cfs caused the cancer which killed him...shame it will only be logged as cancer. point was that me/cfs is a chronic illness, not acute. life threatening situations occur from acute conditions. if we're referring to longterm mortality then id agree that me/cfs will lessen life expectancy and lead to other acute or chronic conditions that lead to an early death.

    but lets not highlight the bit we can argue and miss the uncomfortable fact that this philosophy of having less appearence of symptons is deadly.

    thats one the stock replies i find annoying...id have died without it...another is, ive tried everything etc etc etc
     
  6. lansbergen

    lansbergen Senior Member

    Messages:
    1,161
    Likes:
    594
    You are wrong. This chronic deadly infection does not go away. If the immune modulator does what it seems to do it is a miracle but I can not exclude it only postpones it.

    You might not know it but ME is a chronic disease with acute fases. It fluctates

    Be happy with that but it won't change a thing.[/quote]
     
  7. manna

    manna Senior Member

    Messages:
    368
    Likes:
    257
    i might be, i'm open to that but i wouldn't state it categorically because for me thats closed minded and not encouraging of enquiry. but anyway we can disagree and still be ok with each other hopefully.
     
  8. lansbergen

    lansbergen Senior Member

    Messages:
    1,161
    Likes:
    594
    I disagree with you but I have no ploblems with that.
     
  9. Bob

    Bob

    Messages:
    8,917
    Likes:
    12,639
    South of England
  10. greebo

    greebo

    Messages:
    23
    Likes:
    38
    The Netherlands
    I've been ill for thirteen years, probably a lot longer, but I stopped working in 2001. I've been diagnosed with ME/CFS or just CFS three times.

    I have no idea whether that was the right diagnosis. I think it wasn't.

    I don't know what illness I have/had, but I do know what recovery is. I have recovered, you see, since a couple of months. I was prescribed b12 injections and my health improved the very first day. Within a month my activity levels had become the same as those of the people around me.

    And I mean effortless activity. I've been taking b12 injections for a couple of months now and almost all my symptoms have disappeared. I no longer have pain, I don't suffer from PEM, even after strenuous activity. My headache is mostly gone, I don't have nausea any more, my allergies are disappearing. I don't have a sore throat any more.

    It's really not that difficult to describe recovery. It's just that this easy definition makes PACE look like the wasted money it actually is...

    PS. I should be careful and call it "remission", but I can't I feel far too healthy :D
     
    A.B., Leopardtail and Valentijn like this.
  11. Marco

    Marco Old blackguard

    Messages:
    1,400
    Likes:
    1,094
    Near Cognac, France
    Good to hear greebo.

    Problem is that its such a vague definition that all sorts of problems can result in a 'diagnosis' of ME/CFS and after that its rare to be tested for anything else.

    Your case sounds a lot like an aunt of mine who was exhausted, prematurely grey, depressed and anxious for very many years until B12 injections changed her life completely. She had been in that state for so long that I hardly recognised this 'new" person.

    If I were new to ME/CFS these days I'd resist being labelled with it at all costs.
     
    wastwater and greebo like this.
  12. Dolphin

    Dolphin Senior Member

    Messages:
    6,872
    Likes:
    6,169
    To me "recovered" is/should be synonymous with "cured".
     
    mango, Purple, Valentijn and 3 others like this.
  13. Firestormm

    Firestormm Guest

    Messages:
    5,824
    Likes:
    5,982
    Cornwall England
    That doesn't work though does it Dolphin at least not with a relapsing and remitting condition: how would/do I know if I am 'recovered' unless/until I have a relapse on the basis of your equation with cured? Until such time as we know a disease process and can effectively produce disease modifying treatments that might 'cure' the disease, I don't think 'cured' can be equated with 'recovered'. Else it remains subjective. And until we know more about the disease itself, I might think I am relapsing after a period of thinking I am recovered, when it could be something else...

    All rather confusing. I just aim/hope for stability of function. Remaining on a nice plateau for a while. That would do for me I think.
     
  14. Dolphin

    Dolphin Senior Member

    Messages:
    6,872
    Likes:
    6,169
    If it's a relapsing and remitting condition, surely all the more reason not to use "recovery" and instead use "remission".
     
    Purple, Valentijn and Bob like this.
  15. Dolphin

    Dolphin Senior Member

    Messages:
    6,872
    Likes:
    6,169
    If anyone knows already, or cross checks, whether any of the other criteria are correct, I'd be interested. It would be quite a lot of work to check them all - I might check some if others have been checked.

    Similarly if people find more details about the definition of recovery than given in Table 1, I'd be interested.
    For example, for the PACE Trial it has: Measure:CGI Qualification: 7-point rating of overall health change
    - that's clearly not enough information - it doesn't say what the threshold was. In this case, it happened to be covered by the text:
    i.e. a CGI score of 1 or 2 on the 7-point scale
     
  16. Dolphin

    Dolphin Senior Member

    Messages:
    6,872
    Likes:
    6,169
    Thoughtful comment by Joan Crawford on this paper and the issue of the definition of recovery:
    http://www.ncbi.nlm.nih.gov/pubmed/24791749#cm24791749_4780
    ------
    Some people on mobile devices might have difficulty finding the comment at thi.s link (you have to click "normal PubMed" or something like that to see it).

    An alternative way to see it is at PubMed Commons http://www.ncbi.nlm.nih.gov/pubmedcommons/ - go down to June 4 comments (it's currently the most recent comment in PubMed Commons so easy to find)
     
    Sean, Valentijn and Esther12 like this.
  17. Esther12

    Esther12 Senior Member

    Messages:
    5,387
    Likes:
    5,903
    I want a full return to my prior levels of health... and if not, I want the quacks who took it upon themselves to reassure me about recovery to have to pay some price for the harm done by their unwanted psychosocial management.
     
    Cheshire, soofke, Valentijn and 3 others like this.
  18. Dolphin

    Dolphin Senior Member

    Messages:
    6,872
    Likes:
    6,169
    Frank Twisk on Twitter:
     
    Valentijn, biophile and Bob like this.
  19. Dolphin

    Dolphin Senior Member

    Messages:
    6,872
    Likes:
    6,169
    Frank Twisk had a letter published in reply. Here's the abstract (don't recall seeing an abstract for a letter before).

     
    Bob and Valentijn like this.
  20. Dolphin

    Dolphin Senior Member

    Messages:
    6,872
    Likes:
    6,169
    Full reply from authors: http://download.springer.com/static...787_609b91e6cf4942c6faf6fb4f952a9803&ext=.pdf

     
    Valentijn and Firestormm like this.

See more popular forum discussions.

Share This Page