Stonebird

It seems to us that anyone and their dog is able to talk about "My ME" these days. The situation is a nonsense, a shambles. Meantime people with Severe ME continue to receive nothing, not even their symptoms, like paralysis, formally acknowledged. It doesn't look like the situation is going to change anytime soon. The agenda, clinican rather then patient-driven, as always, remains firmly focused on fatigue; which is not even a defining feature of ME. Can any of us even safely write about "ME" anymore, or claim to have it,  given the domination of CFS and the dilution of the name to mean anything you want it to ? I am not sure we can.

Sense about Statistics have published an excellent,informative,  thought-provoking editorial on PACE. It is a pity,  though they referred to the disease as a "syndrome". Even so, at least they refer to ME as " paralyzing"; that is so enlightened. http://www.stats.org/editorial-on-pace/

In my experience, the Quality of Life score, for someone with Very Severe ME is pretty close to or even below zero; their never-ending, paralysing, tortuous, utterly debiliating agony is way off anyone's scale. There are very few who know that Severe ME is NOT the same as having a severe episode of ME. REF : The Health-Related Quality of Life for Patients with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) Michael Falk Hvidberg,1,* Louise Schouborg Brinth,#2 Anne V. Olesen,#1 Karin D. Petersen,#1 andLars Ehlers PLoS One. 2015; 10(7): e0132421.Published online 2015 Jul 6. doi: 10.1371/journal.pone.0132421

"AFTER OVER TWENTY YEARS it is hard to find new ways to express the horrific reality of very Severe ME, which I can only describe as being pushed off a high cliff into nothing, where there is no language to describe what is going on in your head and body, where there are no medical investigations tolerable and no explanations being bothered to be sought. Too ill to go to hospital you are left clinging on to life, just hoping and praying nothing further goes wrong that requir es medical intervention. Because you simply cannot go there.  You simply cannot engage with people nor explain your terrifyingly hypersensitive reality. Until you get to this point here still might be hope someone will help you. Until you get to this point I seriously doubt you have fully grasped the full reality and horror of ME and you simply cannot imagine how much worse it can still get." from : "Severe ME : Notes for Carers" http://stonebird.co.uk/Notes/index.html

We see psychiatric fatigue rapidly being replaced by a biomedical CFS focus; ME. is much more complex than that, yet the most serious symptoms, like paralysi s, are comprehensively ignored. There is a serious risk of people with ME, especially the most severely affected, being excluded from research. Witness the NIH programme.

I wonder what the founder of the Lancet,Thomas Wakely's reaction would have been if eleven thousand of the sickest and most neglected patients in the world and their representatives had written to him demanding the retraction of the PACE Trial paper ? I would love to have met the extraordinary Wakely, this : "darling of the Trade Union movement, hero to the Tolpuddle martyrs, writer of radical tracts and maker of radical speeches", who by all accounts, spent his life challen ging the vested interests, the medical corporations, who to him were a " an abscess on the body of the profession." The "the old hags of Rhubarb Hall", he used to call  them ! The title of the "Lancet was not idly chosen".What would Wakley  make of the psychiatric lobby and their ongoing refusal to publish the raw data, especially given how so many world class academics are actively challenging the PACE Trial results ? You can't help thinking ...