Monday, December 6, 2010

Three briefs from News On One Click

 7.  Autism & ME/CFS - A Modern Day Munchausen Syndrome By Proxy Scandal

Lisa Blakemore Brown, Psychologist
For whatever reason – and I can think of quite a few – vast numbers of professionals in legal, health and educational circles misconstrue symptoms of Autism, ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) and related disorders as child abuse and parents, usually mothers, are accused of Munchausen Syndrome by Proxy (MSBP/FII). I first came across this problem in 1995 and was so concerned that the entire system could be duped by this approach that I began to write about it in 1997 after a mother lost all four of her children, two of whom were ASD/ADHD. Over time I also saw an emerging pattern in MSBP cases – many children changed after  reacting to vaccines. In a recent news item on FOX in the United States, a case was reported in which the parents of a child with a mitochondrial disorder were accused of MSBP as they attended hospital very frequently with their ill daughter and the hospitals could not detect the mitochond rial condition. Now this is an interesting case because mitochondrial disorders are suspected as being at the root of many cases of ME/CFS and indeed Autism and recently the family of a young autistic, vaccine damaged child with a mitochondrial disorder, Hannah Poling, won considerable damages for the harm done to their child. To demonise parents of ill children whose conditions are iatrogenic by accusing them of MSBP adds insult to injury, is grossly immoral and unethical, destroys families and prevents recognition of children's real problems thereby preventing them getting the help they need, possibly forever.  Could we get it any more wrong?
Lisa Blakemore Brown, Psychologist
Related Links:
Parents Of Mitochondrial Disease Child Accused Of Munchausen Syndrome By Proxy
Kathryn Malone, My Fox9
Hannah Poling Autism-Vaccine Case: Implications for ME/CFS-Labelled patients
Lara, Health Advocate

Red Cross Bars Chronic Fatigue Syndrome (ME/CFS) Patients From Donating Blood

The American Red Cross announced Friday that it is barring people with chronic fatigue syndrome from donating blood to reduce the risk of transmitting a virus that has been associated with the disease. The virus is known as xenotropic murine leukemia virus-related virus or XMRV. The National Heart, Lung and Blood Institute (NHLBI) Task force is conducting research to determine the frequency of the virus in the donor population, whether it is transfusion-transmitted, and whether recipients become infected and develop the disease, it said. Another task force that reviews blood safety for an organization known as the AABB recommended in June that blood collecting organization "actively discourage potential donors who have ever been diagnosed by a physician with chronic fatigue syndrome ... or myalgic encephalomyelitis (ME), from donating blood or blood components."  The statement said: "The Red Cross has implemented the AABB recommendations and has gone further to implement indefinite deferral for donors who reveal a history of a medical diagnosis of CFS." The recommendation came after new research strengthened the possible connection between the virus and the syndrome.
Rob Stein, The Washington Post  

RiME Questions ME/CFS Apostate Countess Of Mar

ME/CFS patients stick it to big hat, no cattle Countess of Mar
(Caption & Pic Courtesy Of One Click)

The Committee on Standards in Public Life lays out seven principles. These include, objectivity, honesty and accountability. Did the Countess of Mar not condemn the CMO Report saying the terminology was ambiguous and confusing and that it denied the true nature of ME? Did you not argue for a strict adherence to G93.3 Code and criticise the use of GET, CBT? You signed up to the APPG Inquiry Report March 2010, yes? You realise that the 13 CNCCs and satellites set up from 2002 were based on the recommendations of the CMO Report which you criticised 16/4/02. Because the clinics were based on that report, many are saying that they are not about ME eg the clinics in Kent exclude people with neurological illness putting them outside the ICD 10 G93.3 classification; didn't you argue for a strict adherence to it 22/1/04? Does this mean that you are no longer trying to represent patients who have the illness described by G93.3 (and Canadian criteria) but patients who would fit wide definitions of CFS? Why the turnaround? Would you care to explain?
Paul Davis, RiME, Campaigning for research into Myalgic Encephalomyelitis

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