Me Rememberance Day

ME is still woefully misunderstood by our health and welfare systems ,  Lia Leendertz read more …





4 responses to this post.

  1. Posted by nell on September 6, 2013 at 1:17 pm

    From what I have heard, getting tested for and treating heavy metal toxicity and allergies may help with this disorder. I hope this helps in some small way. Good luck.


  2. I feel incredibly let down by this publication and circulation of this article. I and some other MEites – who are sicker than me – work so hard to educate people that the core features of M.E. are *not* exhaustion/ fatigue, but neuro and cardiac features. When people see an article like this, what conclusions can they draw but that the myths about M.E. – endorsed by our governments by tying M.E. to the ‘Chronic Fatigue Syndrome’ disease construct – are right? They will certainly conclude that M.E. is ‘mysterious’, untestable, vague and without clear, assessable symptoms. Even though all these things are wrong.

    And people will continue treating us, entirely needlessly, as though we have a disease that’s ‘all in our heads’, for which intervention by the psych industry is appropriate.

    I am not saying Lisa’s husband didn’t sleep for several weeks after contracting whatever caused his disease – sleep is a common reaction by the body to dealing with many an assault on it. But that does not mean he has M.E. I do not know whether he has M.E. Some sufferers are denied testing and are too ill to be able to understand and articulate what their real symptoms are – sometimes they forget what real, healthy fatigue feels like, too. This does not mean they don’t have a serious disease that requires proper diagnosis and treatment.

    But it does mean that accounts like these, which gloss over the reality of the experiences of severe MEites – who desperately *wish* they had symptoms that could be described as ‘fatigue’ – suggest that for even the sickest of us, this is the worst that it gets. It erases the experiences of those with the worst forms of M.E. I would never do that to someone who has a severe version of M.E. None of us should.


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