Hidden disease in the spot light in York: more about Myalgic Encephalomyelitis (M.E.)

Sly Saint

Sly Saint

Senior Member (Voting Rights)
"M.E awareness: Liberal Democrats look to kick-start campaign on the hidden disease

In a motion to Council on the 22nd March, Liberal Democrat Councillors are looking to kick-start a campaign to raise awareness on the often overlooked and hidden disease; Myalgic Encephalomyelitis, otherwise known as M.E.

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"M.E remains largely out of the public conscience and therefore, is often referred to as a ‘hidden’ disease. In response, the York Liberal Democrats are calling on the Council to initiate a public awareness campaign in the build up to M.E Awareness Day on the 12th May."

full article here:

https://stevegalloway.mycouncillor....ork-more-about-myalgic-encephalomyelitis-m-e/
 
Just posted (held in moderation):

It's great that people are trying to raise awareness of ME but worrying to see the old idea repeated that 'studies suggest that cognitive behaviour therapy and exercise are the most effective treatments'. These studies have been discredited (see for example, Carol Monaghan MP's recent speech in Westminster explaining the problems and referring to the biggest of these studies as a 'scandal'. Surveys indicate that more than 50% of ME patients trying graded exercise get worse - some end up bedbound who weren't before.Patients desperately need biomedical research and proper, science-based treatments.​
 
Here's my comment also awaiting moderation.

Please please get your facts straight. The large PACE and FINE trials of Cognitive Behaviour therapy and Graded Exercise Therapy for ME/CFS were null trials. Exercise is harmful for people with ME. Please contact the ME Association to get up to date information.

ME is internationally recognised as a serious physical illness that cannot be helped by psychological or exercise therapies.

The clinics in the UK that are still pushing these therapies are out of date. The NICE guidelines are under review.

If you really want to help people with ME, ask your local clinicians to read the MEA book written by and for doctors with up to date research and treatment information.
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I think this kind of awareness is the very last thing we need. It' s the only kind we have had on this side of the Atlantic,and it has been disastrous. If the Lib. Dems.want to raise awareness they should do a bit of research and maybe work on bringing the truth into the public domain. That would be worthwhile. I can no longer tolerate sloppy nonsense about CBT and GET. They may mean well but more awareness about the "effective treatments" would be worse than nothing. It has caused decades of devastation for so many.
 
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