Health Advocacy
NEWHow WikiLeaks Is Changing The Face
Of Journalism
Jane Bryant
The One Click Group NEW
Courage Is Contagious
How To Whistleblow Safely
Julian Assange
WikiLeaks One Click Launches
Support
Dr Sarah Myhill
Campaign
By Jane Bryant Digital Economy Bill
Threatens One Click
By Jane Bryant UPDATED
March 2010
One Click
Freedom
Of Information
UK Police Harassment
In The Internet Era Barbara Loe Fisher
Interview
NVIC Conference
Style, Gonads
Brass Ovaries
By Jane Bryant New Journalism
Challenging
Status Quo
By Jane Bryant
NVIC Conference
USA How The
Judicial Review
Of The CFS/ME
NICE Guidelines
Was Lost
Jane Bryant
The One Click Group The BMJ
Vaccines Propaganda
Professor
David Salisbury
And
Trimedia
Public Relations David Southall
"A Very
Dangerous Doctor"
Panorama swims
with sharks
Lisa Blakemore Brown Dr David Salisbury
Ooops!
Never Mind Me,
I'm Basil Fawlty! ONE CLICK RESPONSE
David Salisbury
Vaccine Litigation Biomedical Test
For ME/CFS Announced
Dr Sarah Myhill
MB BS The Politics
And Commerce
Of Autism
By Lisa Blakemore Brown
Psychologist Poling
Vaccine/Autism Case
Mitochondrial Disfunction
ME/CFS Patients One Click Response
NICE Guidelines One Click Report
Gibson Inquiry How To Solve A Problem Like ME/CFS:
Why The Gibson Report Has Failed Patients Realpolitik and ME
By Martin J. Walker The Consensus Report
Family Law Reform Canadian Definition of ME-CFS The Weird World of Wikipedia
By Martin J. Walker Click here to email us your opinions.
| [Previous] | [Next] |
| [Previous] | [Next] |
| The Generosity Of ME/CFS Patients And Their UK Charities | ||
 One Click Note: This topical item concerning 'donations' is entirely relevant not just to the risible Lightning Process offered to patients at such vast cost, but also with regard to many of the numerous ME/CFS charities in Britain. In the recent Judicial Review of the CFS/ME NICE Guidelines that was lost in the High Court on 13 March 2009, the dead hand of the ME/CFS charities was readily apparent in the case of Claimants Douglas Fraser, Kevin Short and their ubiquitous adviser, the notorious legal laughing stock 'Margaret Williams'. Often first in the political (and often medical) wreckers' queue on many occasions, these charities are frequently distinguished by their incompetence with malice aforethought, with a marked inability to find their way out of a brown paper bag unless this involves income and flawed 'kudos'. And no, on this occasion we are not referring to the UK AfME and AYME charities whose psychiatric stance on this illness is well known and who supported NICE throughout the Judicial Review, but those others who often operate duplicitously and damagingly to maintain their status quo at all costs - costs to patients. A note on the generosity of M.E. patients Eddie Lewisohn London, UK At the recent RSM conference in London, the neurologist and ME researcher Dr Abhijit Chaudhuri made an interesting remark. He said that no ME patient he had ever treated was lacking in motivation. Jeremy Bearman's recent item "A deplorable state of affairs" claims that ME sufferers are lacking in generosity. We lack a willingness to donate to ME research, he says, and are easily put off so doing. He says (quote)"It's not that the majority of patients can't afford to support any amount of research, as the majority of these patients are spending considerable sums on unproven 'treatments'". My experience is that, because of the stance of NICE, and the lack of knowledge about ME by many GPs, when one first gets ME one enters a medical minefield of disinformation. Even joining an ME patient group is a risky choice. I joined my (local) one, the North London ME Group, and finding that they had a "Barts Representative" I naively thought that going to the Barts "ME Service" would be a good idea - till I got there. We all know it is run by a psychiatrist - I didn't, at the time. Yes, many desparate ME sufferers then go for "unproven 'treatments' ". The worst are the hundreds of pounds spent on what are effectively scams. How else can one describe taking money off ME sufferers and being told, as Phil Parker does on UTube that he can cure you "in three days"? The plethora of "unproven 'treatments' " doesn't prove that ME sufferers have cash available to hand over. It proves that many are deparate. And it has created a climate of suspicion. I would suggest that this climate of suspicion is the reason that the anonyous "Zonko" fundraising idea is not a good one. Silly name, silly idea. [ME Research UK, previously trading as MERGE] I, like all ME patients, am highly motivated. Treated with respect and a little sensitivity, we are all generous, too - especially when it comes to testable, scientific research into the biological causes and treatment of physical ME. Why wouldn't we be? Eddie Lewisohn London, UK ************* Related Links: * How The Judicial Review Of The CFS/ME NICE Guidelines Was Lost Jane Bryant, The One Click Group * One Click Information Release - CFS/ME NICE Guidelines Judicial Review Information Release, The One Click Group * ME/CFS Patients Damaged By Lightning Process Fight Back Information Release, John Sayer/The One Click Group ************* |
||
|
||
