1. Community
  2. Brain and nerves
  3. Chronic Fatigue Syndrome

M.E. or CFS ?

Posted , 7 users are following.

dragontest
dragontest

Myalgic Encephalomyelitis (ME) has been documented in the medical literature from 1934..."CFS" did not come into existence until around 1988.

ME is different in clinical presentation from other chronic fatigue syndromes yet Doctors still get it wrong. What are your experiences of being diagnosed with either ME or CFS? How long has it taken to be correctly diagnosed in the UK?

0 likes, 15 replies

15 Replies

  • Gregh286
    Gregh286 dragontest

    Posted

    i have CFS, not  ME

    diagnosed with CFS.

    95% of my condition is fatigue, low stamina, and PEM (post exercise malaise)

    virtually no headaches, sore joints or muscles.

    the other 5% is cold feet and low patience (from been faigued)

     

  • Bubbles61
    Bubbles61 dragontest

    Posted

    I was diagnosed with m e in 2001 and bak thn cfs was not even mentioned by any of the doctors i saw, it seems to me tht m e is refered to more in england & cfs in america, thy are not the same and shoudnt be classed as the same,, but here  in england they seem to just put them together for the sake of ease,& most doctors over here are still clueless about m e & dont care about it either.maybe in tym things will change wth more research but until then us m e sufferers will just av to keep ploding along....
  • JulieBadger
    JulieBadger dragontest

    Posted

    From my research I thought ME is the same as CFS. CFS is the more modern name for it as instructed under NICE guidelines. My official diagnosis is CFS but I use ME as telling people I am fatigued sounds pathetic to those who don't understand that I consider it more Exhausion. Chronic Exhausion Syndrome is a better title.  I also don't think chronic fatigue described all the other symtoms especially cognitive problems.

    I already had Fibromyalgia diagnosis so when the memory issues became more apparent my doctore thought ME/CFS. It took a further maybe 3 months to get the appointment with the ME/CFS specialists here in Norfolk, UK. After filling in their questionnaire prior to the appointment and then the appointment they diagnosed it on the spot.  They were sure it was ME/CFS and that it had in fact suffered from it for years.

  • GeorgiaS
    GeorgiaS dragontest

    Posted

    I don't understand the importance of this discussion! I was diagnosed with ME and I refuse to use the term CFS because I'm not just fatigued. There are so many symptoms it just don't cover it.
  • Gregh286
    Gregh286 dragontest

    Posted

    hi

    but there are so many subgroups inside CFS/ME.

    Mine is near all fatigue/low stamina.

    Some started with viral, some not.

    Some have low blood pressue and POTS, some not.

    Some have low cortisol and adrenal issues, some not.

    I can tolerate alcohol, many can not,

    Its such a wide and diverse condition. Hence, curing it is so individualised.

  • ann11007
    ann11007 dragontest

    Posted

    Yes, I still find the differentiation or the interchanging of these two terms confusing although I have read the hummingbird website and others. However it's certainly more confusing when talking to doctors. Other patients I have spoken with over the years also  seem to have varying definitions. Even the two main charities involved seem to be unclear about the specific differences. I think this may be because there is so much conflicting advice and information. It's a pity that most of us have to struggle with doctors and other professionals who don't really understand the issues involved.
    • dragontest
      dragontest ann11007

      Posted

      Hi, 185

      It  took quite a few years with my ME reoccurring again and again before a doctor finally sent me for more in-depth tests etc. that showed I have ME. I feel the medical profession do not pay as much attention to CFS as they do to ME for some reason. My initial diagnosis was CFS and they thought it would clear up in 6 to 12 months and now 20 years later and after several neurologists and loads of tests at the hospital the Dr's have finally told me it is ME and it’s basically untreatable and incurable with the present knowledge of treating the condition. Hence, this discussion I posted. I just wondered if it is locally, the NHS is getting it wrong or nationally as a critical condition.

       

    • Bubbles61
      Bubbles61 dragontest

      Posted

      Having had  m e for 14 years i dont feel the government  or health service have really moved forward with any aspect,apart from all the action groups & people wth m e around  bringing it to the attention of others all the tym, sufferers are still left in limbo most of the tym.. My doctor is still clueless & gives no help support or guidence and just shrugs & seys i have to live wth it,, as if i didnt know that, i have got as far as i have my own way doing wot i can wen i can & learning my limits n day to day symptoms & how best to deal n cope wth it..& nothing has changed for me in all that tym where help is concerned from the health service or goverment...
  • Wife_of_Dave
    Wife_of_Dave dragontest

    Posted

    I beleived the two (ME and CFS) to be considered the same.  As with any illness, there are often varying degrees and different symptoms.

    I also believe there has been an attempt to remove the term "CFS" from the mix as describing an illness by one of its primary symptoms doesn't really make sense.  We don't have "chronic forgetfulness syndrome", do we?

    • JulieBadger
      JulieBadger Wife_of_Dave

      Posted

      Unfortunately I can add the Chronic forgetfulness syndrome to my list of conditions.  It's almost like having letters after your name for your qualifications.  I now get a list of syndrome names after mine.  Went for my PIP assessment last week.  It really sounded rediculas the list of 'label's and symtoms.  I did like your newly named syndrome, Wife of Dave lol
  • dragontest
    dragontest

    Posted

    Does anybody with ME suffer with Restless Legs when sitting down or trying to fall asleep?

    I have been taking pramapaxole but it is a cure that is as bad as the restless legs, I ended up falling over the other day due to the side effects of pramapaxole, I managed to bruise myself quit badly as I hit the pavement/curb... I am afraid to take the pills now and wondered if anybody else has experienced similar on these tablets while suffering with ME?

     

    • Bubbles61
      Bubbles61 dragontest

      Posted

      Hi,  restless arms n legs along wth pins n needles & electric shock like pains in toes n feet are a big symptoms i get, especially at night or in bed through the night.. Have told my doctor and asked for some  sleeping tablets but thy wont presribe them, so every night is a restless night,& as like many on here wake up feeling totally cream crackerd ...
Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.