International ME/CFS and FM Awareness Day Is On May 12, 2018
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Stop treating Myalgic Encephalomyelitis (ME) as chronic fatigue syndrome (CFS)

Discussion in 'Petitions' started by MeSci, Jul 11, 2016.

  1. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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  2. Kina

    Kina

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    Here is the actual petition:

    -- 453 signatures so far

    -- At 10,000 signatures, government will respond to this petition
    -- At 100,000 signatures, this petition will be considered for debate in Parliament
     
  3. Horizon

    Horizon Senior Member

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    CFS patients aren't found to have inflammation in the brain or spine. Are ME patients found to have that? In the US they are used interchangeably but i realize some say they are different diseases.
     
  4. panckage

    panckage Senior Member

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    @Horizon They are the same disease. Each naming of the disease has slightly different diagnostic criteria but all refer to the same thing

    The push to get rid of "CFS" is because of the stigma associated with it
     
  5. Skippa

    Skippa Anti-BS

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    So... Do I have ME or CFS?

    Cuz I got diagnosed CFS, but close family member who lives over the county line got diagnosed ME.
     
    PennyIA likes this.
  6. Horizon

    Horizon Senior Member

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    I totally get the stigma and I also hate the name CFS but I've read some actually believe ME is a different illness than CFS and they are mad at the term being taken.
     
  7. halcyon

    halcyon Senior Member

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    You really think that Oxford criteria CFS refers to the same thing as Ramsay or ICC ME?
     
  8. alex3619

    alex3619 Senior Member

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    I think the evidence indicates that a CFS diagnosis may be one of many different diseases, whereas ME might be one or several diseases, but not a great many diseases. However a large percentage of those diagnosed with CFS qualify for ME, and I think that number will depend on which CFS criteria are used.

    We also know that the misdiagnosis rate for CFS in the UK is upwards of 40%. How much over 40% is unknown. I doubt the misdiagnosis rate for ME is high if they use ME criteria.

    We also know that some doctors think chronic fatigue is the same as CFS, just as many think CFS is the same as ME. When we speak or write about CF, CFS, ME and SEID, we are really referring to diagnostic criteria, not diseases. All of these diagnostic categories do contain diseases within them. If looking for one disease entity, it looks like some kind of post exertional aggravation of symptoms is required, and it still might wind up as several distinct though similar diseases.

    Pointing out that ME is defined under WHO etc. is in many respects an own goal. It always concerns me. Why is a bureaucratic code evidence of science? Its an appeal to authority, and an authority which many doctors and bureaucrats will dismiss outright. They know its not a scientific authority.
     
  9. frog_in_the_fog

    frog_in_the_fog Test Subject

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    Multi-systemic Sucks to be Me Disease is the name I give it...
     
  10. slysaint

    slysaint Senior Member

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    The NHS don't use the name 'ME' anymore preferring CFS, often dropping the S leaving us with chronic fatigue which they treat with CBT and anti-depressants.
     
  11. Webdog

    Webdog Senior Member

    My primary care physician and my ME/CFS doctor both say they can't give me a diagnosis of ME, because they have no code for it. So I get a diagnosis of CFS.

    Reading through my medical notes, the term the doctors mostly use is SEID (Systemic Exertion Intolerance Disease).

    It's a mess and "Chronic Fatigue Syndrome" is horribly stigmatizing, but I don't see the point in fighting over the disease name until we have a biomarker. We are so close. Patience.
     
  12. frog_in_the_fog

    frog_in_the_fog Test Subject

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    For some it hurts simply to exist. So the best thing medical science can do is come up with appropriate ways to describe our disorders. We shouldn't listen to the UK's recommendations because they are still stuck in the middle ages. The future looks bright @Webdog, perhaps we should buy some shades.
     
    Webdog likes this.
  13. Deltrus

    Deltrus Senior Member

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    What is the point..

    CFS, Depression, etc are just names for vague symptoms.

    We can settle on a name once disease mechanisms are pinned down. CFS/ME is just a placeholder.
     
    Justin30, Jammy88, rwac and 6 others like this.
  14. parabola

    parabola

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    The use of "Myalgic Encephalomyelitis" has always confused me. Wouldn't an MRI with contrast show brain and spinal inflammation and provide a simple diagnostic if it were universally present in 'us'?
     
    TigerLilea likes this.
  15. Hip

    Hip Senior Member

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    I agree, but it was not the UK but the US that came up with the concept of chronic fatigue syndrome (CFS), pretty similar if not identical to the UK's myalgic encephalomyelitis (ME), but with the important pecuniary difference that CFS can be viewed as having a biopsychosocial etiology (crucial for insurance companies who want to refuse disability payouts), whereas ME is defined as a purely neurological disease, so cannot be seen as biopsychosocial (which means companies cannot refuse disability payouts).

    The two great blows that knocked ME/CFS back to the Middle Ages were the UK's Wessely School, and the US's creation of the biopsychosocial CFS.

    If the UK went back to calling this disease ME, then by definition this disease could not be viewed as biopsychosocial in the UK, and that would be a great step forward.
     
    Last edited: Jul 12, 2016
  16. frog_in_the_fog

    frog_in_the_fog Test Subject

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    Quite right, Sir Wessely, whose name is silently reviled by people of science and medicine, really is holding back progress for the good people of the U.K. and the world. Will it be another lost decade at his hands? Let us hope not!
     
    Last edited: Jul 13, 2016
  17. halcyon

    halcyon Senior Member

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    Not all forms of inflammation will cause a lesion that can be visualized with MRI, and not all lesions are large enough to be visualized with MRI.
     
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  18. duncan

    duncan Senior Member

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    The US corollary might be "Stop treating Myalgic Encephalomyelitis (ME) as Chronic Fatigue Syndrome (CFS)."
     
  19. Goodness to M.E.

    Goodness to M.E. Senior Member

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    This may help clarify the history and difference between M.E. and CFS.
     

    Attached Files:

    panckage likes this.
  20. alex3619

    alex3619 Senior Member

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    Changing the name back to ME only counts if we can get the guidelines for diagnosis and treatment officially changed. I can envisage they "give us what we want" and call it ME, treat it as psychological, and prescribe CBT/GET. Part of the problem is that ME is widely regarded as psychological, despite the major flaws, and blatant irrationality, in that view. There is nothing stopping them from changing the reporting code to reflect ME but changing nothing else.

    We need a new name, based on the pathophysiology, and tied to a diagnostic test. Or we need to force agencies like NICE to give ME separate guidelines. This will be resisted. In order to deal with PACE we need to point out that CBT/GET is proven, by their own data, to be a very expensive null treatment. We need to reiterate there are no objective benefits.

    Petitions can raise awareness, which is good. However its more important to ensure that research uses appropriate diagnostic criteria than an actual name change.

    I don't think we will get a new name until we have a diagnostic test, and then it will be based on the pathophysiology. SEID was an attempt to do that, but I think it fell short of the mark.

    What will be of value though is if the numbers signing a petition reach a high enough level to make politicians take notice. Who do we have who is ready to address parliament aside from the usual advocates? We should be thinking of a team.
     

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