ME Awareness Month

The month of May is “ME Awareness Month”, with May 12th being the particular day, and I have also seen the week starting May 11th designated as ME awareness week.

ME is classified by the World Health Organisation as a neurologically-based disease. It is of unknown cause, although there are several theories including viral and environmental agents. There is no known cure.

Unfortunately, in the UK the NHS seems to have ignored the WHO’s classification of ME as a specifically neurological illness, and has lumped ME together with any and all unexplained tiredness and fatigue, which can in fact be caused by a number of things, including Lyme Disease, Lupus, vitamin B12 deficiency and Pernicious Anaemia, Thyroid and adrenal problems, Sjögren’s, PCOS and other endocrine diseases, MS, fibromyalgia, depression and more, and has called the whole collection CFS, MEcfs or cfsME.

Within the umbrella of CFS there is obviously a vast spectrum of symptoms which range in severity, from those who are experiencing a mild loss of ‘get up and go’ to those who are in constant pain and utterly bedbound and unable to care for themselves, and since it is an umbrella term, treatments that may be helpful for mild types of CFS, such as GET – graded exercise and CBT – cognitive behavioural therapy, are wholly inappropriate and can be harmful for those who actually have ME.

CBT can be useful for people not coping well with any long term chronic illness but should not be touted as a main treatment for ME in the way that it is, based on the faulty assumption that CFS is inevitably linked to caused by psychological factors, and GET is harmful to PWME who have the key symptom of Post exertional malaise.

This situation has been exacerbated by the psychiatric establishment which has greedily claimed all ‘CFS’ patients as their own, baselessly alleging that all CFS must be related to mental and emotional factors.

Thus the tendency is to treat all CFS patients as though they are all suffering from an unexplained, probably psychologically-based, rather than neurologically-based illness, regardless of the severity, and further to fail to investigate thoroughly or adequately in order to rule out any other cause (such as those listed above).

There is no definitive test for ME yet (largely because genuine research has been so scarce), and so ME should never be diagnosed until every other possible cause has been eliminated.

The classification of ME together with any unexplained CFS is a nonsense which means that people who actually have curable and treatable diseases aren’t getting the help they could and should be able to expect, while those with ME are simply treated with disdain instead of receiving the palliative care they need.

This is a wholly unacceptable situation for everybody involved, which helps no-one, except those few outspoken psychiatrists who like to gain notoriety by making the psychological case and denying the reality of the suffering.

A friend has also pointed out that MS, asthma, duodenal ulcers and other illnesses were all considered psychiatric problems before biomedical caught up.

I will try to post more on ME and CFS over the month.

What can you do to help?

Please help to raise awareness, both of the suffering and this intolerable situation of conflated classification:

• share this post
• like and share the facebook pages for May 12th and the ME Association
• follow the #MEcfs hashtag on Twitter • you can download and print ME awareness leaflets from
http://www.mechat.co.uk/db/tips.htm • donate to ME Research UK
http://www.meresearch.org.uk/support-us/

A quick p.s. to say I got the names of some of the treatments confused (blaim brain fog!) so I have done a quick edit and an update of my original post.

Additionally, a note on the ‘Lightning Process’ which thankfully is not funded by the NHS, as it has harmed a number of people and made them worse so people need to be warned about this. See for example
http://www.sayer.abel.co.uk/MESNORFOLK/LP.html

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3 responses to “ME Awareness Month

  1. thanks for this, will reblog

    Like

  2. very important and well written, thank you so much!

    Like

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