Stonebird

My name is Jill McLaughlin. I have been involved in advocacy  for 15 years and have worked with many patient groups and organizations. I would like to address the ongoing issue of diagnosis and terminology. This is a CFS committee, yet has included ME and ME/CFS. However, ME patients do NOT want their illness to be called CFS or changed to ME/CFS. These CFS / CFIDS / “ME/CFS” groups continue to promote the association, ostensibly to make CFS sound more serious. These groups have no right or mandate to represent or speak for ME patients, even though they may claim to, and collectively have too few members to presume such a thing. ME is a stand alone dx. We do not need two names. ME is a neurological illness based on CNS dysfunction. Fatigue has no more to do with ME than it does with AIDS, MS or cancer. ME is a testable dx of inclusion, with signs and objectively measurable pathology. CFS is an unexplained, un-testable, heterogeneous dx of exclusion. Not the same. Contrary to w...

A question from Linda on cognitive dysfunction : The word ' cognitive dysfunction ' covers a wide range of distressing and disturbing communication difficulties which seem yet again to be down played , under-described in symptom lists and not taken seriously enough by the medical profession. "Brain fog" is the classic name we use to cover over the horrible reality of living with a brain that is not working properly. In my experience the cognitive dysfunction is profound , intimately connected with and difficult to separate from the interaction with profound noise sensitivity, eye pain, blurred vision , photophobia, loss of motor control and ability to control physical function . For me cognitive dysfunction causes massive problems with receiving, processing and comprehending information, whether visual, auditory, tactile, from an external source, as well as thinking ,imagining, visualising, remembering and comprehending information and speaking it. Answering quest...

Here's an imaginary charity - what is terrifying is that it would probably be taken infinitely more seriously than the 25% Group , would attract many more members plus celebrity support , would exercise massive influence over national policy - and would easily be able to pay its staff large salaries.  Where are the rest of us going wrong ?

I wonder how many people with severe ME experience paralysis. I have only actually heard of a couple of people and I have never know anyone personally who experiences it in the same way as me. I think that when people say they are paralysed we all think it means the same thing. We don't ask for more information. So we don't get a clear picture. In severe ME no one seems to take much notice of it, even the doctors and it tends to be rarely put on any list of symptoms, even though it is so serious and extreme. In fact most neurological symptoms tend to be down played in ME, thus we have the totally misrepresenting image of the 'tired all the time' person whose fundamental symptom is fatigue. No. That is not me and if it is you then I doubt you actually have ME to be honest. That or I don't! In fact the people I have known with the worst symptoms, often think they may not have ME because their symptoms are so extreme that they simply do not fit i...

The quote from Simon Wessely is an extract from the fascinating National Archive files,which were kindly supplied to me by the Grace Charity.  It is part of a letter Simon Wessely wrote to Mansel Aylward, in 1993, at the Department of Social Security, in response to a leaflet the MEA published listing "CFS/ME" under " Other Neurological Disorders ."  Dr Wessely stated that " I am disturbed that this disorder should be listed as a neurological disease " and went on to claim that there is " far more evidence suggesting that" schizophrenia and manic depression "have a neurological origin than does CFS/ME. " The " main difference " he stated "between CFS and the major psychiatric disorders is neither aetiological, nor symptomatic, but the existence of a powerful lobby group that dislikes any association with psychiatry ." Earlier this year Professor Simon Wessely was awarded a Knighthood for his services to hea...

It is not hyperbole to state that my wife's life is a living nightmare- it is not just that her body is thick with pain and numbness, all the time , it is the extreme noise sensitivity that is such a torture - so extreme that I have to avoid making any noise, even the sound of my scratching my head, can cripple her.  It makes it impossible for my wife to see anyone, yet she is in desperate need of expert help. Except that help is not available. It has not been available for the last 20 years - and never will be until ME is separated from CFS - that is not going to happen any time soon, given the unstoppable ascendency of the biopsychosocial model , which to our horror is dominating the physical research agenda , aided and abetted by the collaboration of AfME , the MEA , clinicians and those screwing it for ME, who should know better, condemning my wife to many more years of suffering, if she survives that long. Such silence.  The turning point, in my mind, was marked by an...