Showing posts from August, 2010

Rad ! How people with ME can change the world.

Rad ! How people with ME can change the world. Greg Crowhurst Aug 28 2010 (Permission to repost) " As of 1st November 2010, blood donors who report that they have had ME/CFS will be permanently excluded from giving blood in the UK. This change is being made on the grounds of donor safety, as ME/CFS is a relapsing condition. It brings practice for ME/CFS into line with other relapsing conditions or neurological conditions of unknown origin " ..the statement above,  today on CoCure, from the Department of Health, to the MEA is a major victory; many  thanks to Charles Shepherd .  The DOH's previous position, just over a month ago, was that  "in the absence of any infectious cause of CFS" ,   people with ME were prohibited from donating blood " while they felt unwell ". However Shepherd stressed that " w hilst it is  true that the role for persisting infection in ME/CFS remains uncertain  there is very sound evidence, as is referred to in Sir

An awful lot of nothing

An awful lot of nothing  : the lack of treatment for people who have ME. My wife , who has very severe ME, is in dire need of proper biomedical testing and treatment. I have scoured the internet seeking out information on Treatment Protocols for the Severely Affected. I cannot find a single one !! Those protocols I did find were wildly inappropriate for my wife, who is far too ill to attend a clinic, participate in a lengthy examination process, rise an exercise bike, go on tilt table etc . How many clinicians have a clue about severe ME  - you have to wonder !!  It seems nothing has changed much since the research I carried out in 2006,  for the the 25% Group, which uncovered  a shocking picture of severely physically ill ME sufferers being labelled as psychiatric patients, being treated with contempt by many GP's, doctors and nurses, being locked in  secure units and shut in AIDS wards, being refused food and being forced to participate in inappropriate  graded exercise a

Psychological Assault : AfME and the proposed Bristol Lightning Process Study

Psychological Assault : a Stonebird response to AfME's position on the proposed Bristol Lightning Process study.  Greg Crowhurst 23 Aug 2010 (Permission to repost)  As it did over the NICE guidelines Action for ME has chosen again  to take a lone  controversial  stand on ME, one not supported by the  majority of UK ME Charities.  Any clear understanding of ME can only be  based upon a clear definition. It is difficult to find out the exact details of the proposed Bristol  LP study , however if it is based upon the Oxford Criteria, then the Ethics Committee will not be able to discern precisely who the trial is for, as the Oxford criteria exclude  those with neurological disorders . Used only by a small group of English psychiatrists (the Wessely-school) and by the university of Nijmegen, Netherlands (Neilson 2002), the Oxford criteria , by definition, excludes all those with authentic Ramsay-defined ME from study . (This is good, because in theory it should exclude

The Heart Sink Factor

"' In purity and according to divine law will I carry out my life and my art .(Hippocratic oath) '"..except that is, when s omeone with ME walks into my consulting room, my doctor's heart will sink and I will seek to boot  them out the door as quickly as possible. With a condescending air bordering upon pride and a quirky self-satisfaction, I will  remain airily unconvinced that ME is real , even if one of my children have it;  I am a "skeptic", I am not on your side. I will leave you to suffer, alone, for years on end, without even examining you...blah, blah, blah...." This is the reality of trying to get treatment for people with ME. It's the rhetoric that in our experience, so characterizes ME - and is completely  soul-destroying  . There 's lots of good intentions, wonderful presentations going on all over the place.  But really, really, when it comes down to it I am not convinced that anyone knows what to do with Linda, so severely

Could Florence Nightingale nurse us back to health? (A Response)

 A response to  : Could Florence Nightingale nurse us back to health?  The Guardian 13 Aug 2010 The medical establishment today would most likely dimiss Florence Nightingale as a "malingerer" in need of Cognitive Behaviour Therapy to "cure" her "maladaptive thinking. Florence Nightingale ( and Charles Darwin too by the way) , who suffered, most likely from ME - leaving her housebound, too fatigued to talk to more than one visitor at a time, for many years, would despair at the way the NHS offers no physical tests, no biomedical treatments for this neurological disease, rather it just leaves patients in agony, as it did in her day, suffering from a multitude of severe physical symptoms for decades on end. ME Awareness Week , every year is timed to coincide with Florence Nightingale's birthday. What would Fl

At last

At last !!! ME is front page headlines !! Stumbling into my local village newsagent early this morning, after my bike ride, I could easily read the BANNER headlines at a distance , even with the sweat in my eyes : "AT LAST A RAY OF HOPE ; CITY COULD LEAD THE WORLD ON ME" I paid for my copy of the Eastern Daily Press (EDP) and walked out of the shop with a big grin on my face. Sometimes, you know, you get moments like this, dramatic,  triumphant moments  that spur you on , keep you fighting. Right now ,  my wife lies in bed, too ill to join in . My joy, though this morning, is unbound. I just want to pay homage to Invest in ME, for all the hope they have given me, especially  today. There are no  words that could possibly express my admiration and gratitude  for their incredible courage , sacrifice and  unswerving determination. Today the tables have turned.

Nobody knows how hard it is with ME

Nobody knows how hard it is nobody sees you loneliness  with ME Nobody sees how the moments drag by nobody sees how you cry and cry with ME The way it tortures you the whole day long; the way our love fights this wrong Nobody sees how the world goes by nobody knows how your dreams slowly die, with ME Nobody knows how alone you are Nobody cares that you don't go far with ME. The way it tortures you the whole day long; the way our love fights this wrong