Dr Shepherd says 20% make a full recovery

Discussion in 'Fibromyalgia Main Forum' started by quilp, Dec 13, 2008.

  1. quilp

    quilp New Member

    A well respected Dr who has done a lot to help those suffering with ME has stated that 20% of patients make a full recovery. Does anyone else think this is very high ? I was of the opinion that 100% recovery rates were less than 10%. Any thoughts please

    Kind regards Mark
  2. Bluebottle

    Bluebottle New Member

    I thought the figure was 8%, but there are lots of different ways of defining M.E. now thanks to the psychiatrist's strangle hold on the illness and their insistence that some patients with mental disorders be included.

    Dr Shepherd does a good job but he has insisted the name myalgic encephalomyelitis be changed to myalgic encelopathy (or something like that!), which he has made up - there is no such illness.
  3. ladybugmandy

    ladybugmandy Member

    i would guess that the 100% recovery people were treated within months of becoming ill...and maybe they are very young and have more growth factors/hormones....

  4. quilp

    quilp New Member

    Hello Bluebottle and Ladybugmandy

    Yes I thought it was 8% too. Why would he want to inflate that figure ? It just makes the Government even less likely to want to address the illness.
    I agree Ladybugmandy but you have to realise that over here in the uk people, both young and old are waiting months, even years to be diagnosed because our GP's are so sceptical about the illness. As for 'being treated' that just doesn't exist ! Graded exercise and CBT and there's a waiting list for that, AND its not available throughout the country.

    Kind regards Mark
  5. ladybugmandy

    ladybugmandy Member

    yes..i have heard horrible things about the UK and CFS. its unbelievable.

    i hope there are some doctors there who are willing to try other things. i was also untreated for 15 yrs...and had to search long and hard to find someone here willing to take chances and risk their license.

  6. tansy

    tansy New Member


    When I first became ill the only national organisation that provided information on ME was the MEA; they were already using inflated statistics. Whilst I understand their wish to give patients hope many of us made bad choices (finances, career etc) based upon their figures.

    Dr Charles Shepherd is well aware that people with ME object to his use of -pathy and the ME Association’s adoption of this name yet neither he nor the MEA have reverted back. Since the construct of CFS, and it’s ever increasingly loose definitions, we feel that this is only making matters worse.

    The total recovery rate for ME, against chronic fatigue that can be caused by a wide range of physiological and psychological factors, is lower that 20%. However, some achieve various degrees of improvement though may not be able to sustain them long term. If PWME continue to be grouped in with CF then the statistics will drop further since the CBT and GET on offer at most of the fatigue clinics is unsuitable them. This is being compounded further by the lack of investigations/tests which the govt have been persuaded are not needed.


    Yes it is dreadful here and getting worse. The Gibson Enquiry's findings and recommendations were ignored; if the Judical Review of the NICE guidelines goes in our favour we will have two independant conclusions and the govt may find it more difficult to ignore us. This is tied in with the desire to reduce the numbers receiving sickness and disability payments; that's why the psychobabblers have got away with their misinformation.

    Tc, Tansy
  7. aftermath

    aftermath New Member

    Some of the stuff coming out of the UK is totally appalling.

    You guys to unite behind an advocacy organization (whatever the most effective one is) and STICK TOGETHER AS ONE TO PRESSURE THE GOVERNMENT TO CLASSIFY ME/CFS AS A NEURO DISEASE ONLY.
  8. ladybugmandy

    ladybugmandy Member

    that just sickens me.

    i know that dr. enlander in NYC, who was/is the royal family's physician-in-waiting, had written a letter to the queen re: CFS and how it was not being properly treated in the UK.

    i guess he was not taken seriously....

    has anyone thought of contacting an international civil rights organization or something? even the UN considers CFS a health problem.

    [This Message was Edited on 12/16/2008]
  9. Rosiebud

    Rosiebud New Member

    who recover within the first two years make a full recovery but after that chances lessen.

    So I've read.
  10. wendysj

    wendysj New Member

    I was dx'd CFS in 2004 after being very sick for over a year. I was still sick for at least 6 months after that. I started to get a little better and then (BAM) got hit again and was sick for a while... It has done that for the past 5 years.

    My question is these people that "recover", does that mean perminately recovered? I didn't think that was possible. I thought you could go into remission but never be "well" - meaning no chance of getting sick again.

  11. wendysj

    wendysj New Member

    I forgot to mention how sorry I am that people with this illness in England have to suffer the physical pain and endure the mental pain of being cast as liers or crazy people. That has to make it so much harder.... I'm so sorry that people would ever think anyone would create such a wide spread conspiracy. Why would anyone do that??? Argh. That's ridiculous!

  12. quilp

    quilp New Member

    I went to my GP some eighteen months ago. I sat down explained ME and how I was wanting to wean myself off antidepressants.
    She told me i'd have to make another appointment because she needed to read up on the illness because she knew nothing about it ? Frightening ? Well this was a newly qualified doctor fresh from medical school, not some old, labouring about to retire 'oh ME is not an illness, it doesn't exist' kind of GP'.

    Kind regards Mark

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