Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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The NHS: "Chronic fatigue syndrome or ME?" - has anyone challenged this yet?

Discussion in 'Action Alerts and Advocacy' started by snowathlete, Feb 24, 2012.

  1. snowathlete

    snowathlete

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    Has anyone, or any of the ME charities, complained about this page?

    http://www.nhs.uk/conditions/Chronic-fatigue-syndrome/Pages/Introduction.aspx

    Having yesterday experienced the consequences of doctors trying to ignore the ME component of my diagnoses in favour of CFS, i realise now the seriousness of the problem. The statements on this page really need to be challenged, specifically the statements:

    Chronic fatigue syndrome (CFS) is the term often used and preferred by doctors. This is because the main symptom is usually chronic fatigue. There is also little evidence of brain and spinal cord inflammation, as the term "ME" suggests. ME is thought to be too specific to cover all the symptoms.

    ME is often the preferred term of people who have CFS. This is because they feel "fatigue" is too general, and does not reflect the severity and different types of fatigue. They also feel that even though fatigue occurs in most cases, it is not the only symptom people experience.


    The doctor I saw yesterday in accident and emergency wanted to use the CFS component of my diagnoses to put my symptoms at the time down to a panic attack. Which it was not (if you want a full account check out my post in the "Detox: Methylation, ..." section.

    Best
     
  2. Enid

    Enid Senior Member

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    I'm a 12 yearer snowathlete and stunned to see Dr Shepard has made "NHS Choices" discussing ME. In my early days they didn't even accept CFS. I had a similar experience collapsing and ambulanced to A&E only to be told it was "all in my mind".Like you it was a question of understanding and self treating from all those who understood the disease. I agree entirely with the term ME - neurological problems suspected and brain MRI scans revealed "high spots" in my brain. Still so ignorant of the facts most of our Docs.
     
  3. ukxmrv

    ukxmrv Senior Member

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    Snowalthlete,
    There was a huge thread on NHS choices website on another forum (one called Foggyfriends). Someome had a long correspondance with the people who produced the website (DOH) on a number of different points regarding ME and CFS.

    As you probably know we patients with ME have been fighting the rebranding of ME as CFS for a long time. One major obstacle was the Chief Medical Officer's report which said that CFS was the best term in the 90's.

    Before CFS was invented there were doctors who would have put down ME symptoms as a panic attack (given the psychicatric workover of the Royal Free Epidemic) but the problems I encountered with these ignorant doctors was far less then.

    More recently given the NICE guidelines we lost an oppertunity to educate doctors about ME and CFS. People with CFS shouldn't have their symptoms put down as panic attacks either.
     
    justinreilly likes this.
  4. Valentijn

    Valentijn WE ARE KINA

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    Funny, I thought the main defining symptom of ME/CFS was PEM/PENE :) I'm also not aware of it being required or even customary to name the disease after the primary symptoms.

    It's also interesting how they subtly load the language used to describe each name. When talking about CFS, "is" and "is thought" are used - implying that these statements are indisputable and objective.

    Then in the ME section, it's all "they feel", implying an emotional preference with no rational basis.

    I doubt this occurred accidentally.
     
    justinreilly and Bob like this.
  5. snowathlete

    snowathlete

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    Very good observation Valentijn.
     
  6. justy

    justy Donate Advocate Demonstrate

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    I agree Snow with all you say on this matter. The UK Govt and parliament recognise the disease M.E and the WHO definition of it as a neurological disease, so how is it that the health wing of our Govt gets to decide to call it something else, with all the implications this brings. When i tell a doctor or health worker i have M.E they usually always refer to it as CFS thereafter. I usually ignore them and keep referring to M.E - although to be honest i now never go to the doctors, havent done really for the past couple of years, they never ask to see me, even though they know i have been very ill and housebound (bit better now) Despite having a fibrotic lung disorder and having had cervical changes that required surgery a few years back i am completely ignored - i dont get called in for flu jabs ( they say i am not at risk as i dont have an immune disorder - hang on i do have lung fibrosis) and i have never been called back for follow ups after my surgery. i get completely ignored. I fi have a problem - like a lung infection i just ring up the secretary and ask for antibiotics - when i wanted a wheelchair i just asked the nurse and she arranged it. When i needed a supporting letter for my DLA my doctor wrote 'Depression' which i asked to be removed as i dont suffer from depression, but they wont remove their mis diagnosis of depression from my medical notes, despite all evidence that i really dont suffer from it.

    Sorry - that turned into a right rant!
    Wahts to be done?
     
  7. snowathlete

    snowathlete

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    Well, when i feel up to it i will take a look at the other forum which has a post about this (thanks for mentioning that!) and will write letters asking questions. As you say Justy, the government even officially recognise it, so its really not on for the NHS to pretend they dont know.

    What having ME has taught me is how bad our country is, and i just feel so disenfranchised from it. I dont feel i have a national identify now, because i hate being British because of what that really means.
     

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