Stonebird

Stonebird : the lived exerience of Severe ME BACME ?? Who ?? Greg Crowhurst (permission to repost) BACME : the " British Association for CFS/ME" ...who ?? On a nightmare day of horrible physical suffering, on a day of somehow getting through and maintaining some shred of sanity, we come across late last night, wi this posting from the West Midlands ME Groups Consortium on BACME, the unaccountable organisation that has all of a sudden seems to have set itself up as the sole training provider for ALL NHS staff in "CFS/ME" "http://www.meassociation.org.uk/images/stories/wmmeg_statement_june_2010.pdf My wife's reaction was immediate and fierce . So this morning I try and find out about BACME. Not easy for there's no apparent website. In charge , apparently is Esther Crawley who is " a leading supporter of CBT/GET and is dismissive of the regular and consistent patient reports which identify adverse effects; she is now...

  Today I feel My Powerlessness I shake with powerlessness and rage . All of a sudden , here in the UK it’s those on Disabled Living Allowance who are responsible for there nor being enough police men on the beat; the Prime Minister announced in Parliament yesterday. As Chris Ford argues so powerfully  , scapegoating of the  most vulnerable is entrenched in the New Right agenda : “ the New Right and some of their supporters continue to cling onto some notions of eugenics in order to scapegoat unpopular minority groups who are viewed on the right as the new 'undeserving' poor. These include indigenous groups ( for example, Maori and Aboriginal peoples), ethnic minorities (who mostly hail from immigrant backgrounds) and single parents, amongst others. With the emergence of the New Right and their neoclassical agenda of shrinking the size of the state, there has been a need to scapegoat these and ot...

  Today I feel My Powerlessness I shake with powerlessness and rage . All of a sudden , here in the UK it’s those on Disabled Living Allowance who are responsible for there nor being enough police men on the beat; the Prime Minister announced in Parliament yesterday. As Chris Ford argues so powerfully  , scapegoating of the  most vulnerable is entrenched in the New Right agenda : “ the New Right and some of their supporters continue to cling onto some notions of eugenics in order to scapegoat unpopular minority groups who are viewed on the right as the new 'undeserving' poor. These include indigenous groups ( for example, Maori and Aboriginal peoples), ethnic minorities (who mostly hail from immigrant backgrounds) and single parents, amongst others. With the emergence of the New Right and their neoclassical agenda of shrinking the size of the state, there has been a need to scapegoat these and ot...

Stonebird : the lived Experience of Severe ME A  response to  The UK Budget :  where's the ME Charities ?? Greg & Linda Crowhurst 22 June 2010 (permission to repost) Where 's  ME ??? Learning Difficulties , Autism, Mental Health, seemingly every  big charity have issued a Budget response already , strongly condemning the plans for Welfare Cuts and DLA .  But where's the outraged voice of  ME ?? Come 2013 and if you are a Severe ME sufferer claiming DLA, you will have to undergo a (disdainful ) encounter with a medic who has not the faintest notion of the complex neurological disease that is Severe ME ;  it's going to be called  a  readiness to work assessment. How can continuing to deny the reality of the physical illness that is ME  and  how can the ongoing   refusal  to biomedically treat ME,   be expected to get anyone back to work ? Continually hounding people with ME  to ju...

The late 1980’s and early 1990’s were a different era. Chronic fatigue syndrome (ME/CFS) made the cover of Newsweek and major articles appeared in Rolling Stone and major newspapers across the country. CFS support groups sprang up out of nowhere. The first scientific conference on CFS was attended by hundreds of doctors and researchers. Cort Johnson , Phoenix Rising http://aboutmecfs.org/Int/IntHennesseyCFS.aspx "In 1994, a group of government propagandists and psychiatrists on the take from insurance companies created one of the most damaging documents in the fifty-year history of ME/CFS: the 1994 Centers for Disease Control Case Definition.  " Maryann Spurgin, Ph.D., Reviews the 2003 ME/CFS Clinical Case Definition http://www.cfids-cab.org/MESA/cccd-1.html     You guys are so screwed up. You are like little lobsters sitting in a pot of lukewarm water and the corrupt insurance companies are turning up the heat and the those of us who are smart ha...

Went to a senior - level meeting yesterday, at the local PCT.  After 17 years of living on carer benefit, my clothes feel a bit worn, my hair not neatly trimmed ,  my sandals out of place. Being swished to the top floor, past  PA's, PC's , curved desks, busy open plan partitions,  was to glide through  the world I used to know; now it's all the kitchen, the bedroom , toilet and garden, where we sit in isolation,  for years on end. My voice is an effort.  If asked I would have said I feel tired and angry.  I make my tiny contribution, speaking up, I hope , for the severely affected. Making every word count. Yes; there's an impact. It's no game. There's no ego. This is me ,  fighting for my love and our life. Out of place here in this expensive 21st century HQ. A bit of a shabby carer .

  From BMJ : http://www.bmj.com/cgi/eletters/340/apr22_3/c1777 Stouten's comments are concerning because he is quoting fatigue as a cardinal symptom of CFS, which is fine if you separate CFS from ME and admit that you are really just looking at people who just have fatigue conditions rather than a neurological disease. However people with ME do not even have to have a diagnosis of Fatigue, to have ME ; it is a glaring mistake to not use the Canadian criteria to define the group of people used in the research , which would much more clearly identify ME patients. Looking at the percentages, quoted in Stouten, he points out that 86% of people still had significant fatigue at 70 weeks and 26% were made worse, which seems to suggest that these people probably had ME and the other 14% did not. ME is an exhausting illness , however the fatigue the study should have been looking at is post exertional fatigue, which has nothing to do with "illness b...