Tuesday, October 28, 2008

Medical Misogyny - Margaret Williams - 27th October 2008

I would tell everyone affected by ME, CFS and indeed Fibromyalgia that this is essential reading, very, very scary but forewarned and all that...If the Wesley school keep the uper hand in the treatment of chronic fatigue diseases many many more people are going to suffer the outrage of inappropriate, even harmful, treatment and being demonised as malingerers. A total nightmare!

Medical Misogyny - Margaret Williams - 27th October 2008

Wednesday, October 01, 2008

DIAGNOSTIC METHOD FOR FIBROMYALGIA (FMS) OR CHRONIC FATIGUE SYNDROME (CFS)

This could be world changing, patent pending at the moment though....

(WO/2008/010082) DIAGNOSTIC METHOD FOR FIBROMYALGIA (FMS) OR CHRONIC FATIGUE SYNDROME (CFS): "The invention relates to methods for the diagnosis, prognosis and treatment of Fibromyalgia (FM or FMS) and Chronic fatigue syndrome (CFS) and to products for use therein.

Background of the invention

FMS (code G93.3) and CFS (code M 79.0) are considered as two different diseases based on the International Classification of Diseases (ICD-10) supported by The World Health Organization (WHO).

There is some overlap in symptomology between the diseases: bodily pain, chronic fatigue, unrefreshing sleep, mood disorders, irritable bowel; but the diseases have different clinical presentation profiles, as well as different criteria for case definition, prevalence and prognoses. A detailed clinical history, a full physical exploration and some complementary biochemistry test (routine analysis in blood and urine: a complete blood count with differential, C-reactive protein, alanine aminotransferase, albumin) allow physicians to provide a clinical diagnosis based on: -FMS: Clinical criteria of the American College of Rheumatology (1990)18 (ACR'90). -CFS: Clinical criteria of the Center for Disease Control and Prevention (19Fukuda et. al 1994) (CDC94).

Summary of the invention

The present inventors have identified positions of single nucleotide polymorphism (SNPs) which can be used for reliably determining FMS and CFS phenotypes. Accordingly the present invention provides a method of diagnosing or prognosing a fibromyalgia syndrome (FMS) or chronic fatigue syndrome (CFS) phenotype in a subject.....The invention also provides a method of selecting a suitable treatment for treating FMS or CFS in a subject, and a method of treating FMS or CFS in a subject as set out in the present claims."

Petition the Prime Minister to limit the promotion & delivery of Cognitive Behavioural Therapy [CBT] within the NHS

I struggle enough with acute guilt arising from all the limitations having a chronic fatigue condition (fibromyalgia)impose on those with CFS without being told CBT is the answer. i am lucky in that I was referred to the CBT therapist at my GP surgery, she did the initial interview and concluded she ( and CBT) would not be of any help to me, so there you go from the mouth of a CBT therapist herself. . . . and I was referred on, and on, and still going on..

I still laugh though when I recall her asking me about my pain, one at that time was acute sharp, stabbing pains in my elbows which I described as if someone was sticking needled in to them...to which she asked " who do you think is sticking needles into your elbows?"

Er, no-one, I was just describing the pain, a lexicon all of its own to be sure!

The serious business now, please sign to register your opposition to CBT for all CF conditions, blog or email and make this huge


Serious Stuff: ME Free For All:

"Click here petitions.number10.gov.uk/NHSCBT/ for the online petition

We the undersigned petition the Prime Minister to limit the promotion & delivery of Cognitive Behavioural Therapy [CBT] within the NHS according to available evidence.

More details from petition creator

Following economist Lord Layard’s promotion of CBT on economic grounds, the NHS has seen a boom in the funding made available for the exclusive employment and training of CBT therapists in the NHS. However, equal funding has NOT been made available for a diverse range of psychotherapies.

CBT continues to be aggressively promoted on the grounds of ‘evidence’ of its alleged effectiveness in treating some forms of mental distress, thereby severely and unfairly biasing public perception of CBT as a cure-all when this is patently untrue. Published evidence exists that shows CBT to have no long-term benefit in treating common difficulties such as anxiety or psychosis.

Further evidence also shows CBT to worsen symptoms in people who suffer from, for example, Myalgic Encephalomyelitis (ME)/ Chronic Fatigue Syndrome (CFS). As CBT is promoted on the grounds of ‘evidence’ of its effectiveness with some patients, this petition calls for the cessation of the use and promotion of CBT in the NHS where there is either no ‘evidence’ of its effectiveness or where ‘evidence’ exists to show that CBT is ineffective or deleterious to a patient’s wellbeing or symptoms"