Tuesday, February 21, 2006

National Fibromyalgia Association news

Excellent article about Lupus and Fibromyalgia - diagnosis and treatment...

National Fibromyalgia Association: "Overlapping Conditions -------Lupus: The Prototypical Autoimmune Disease
What exactly is this disorder, so often misdiagnosed as Fibromyalgia? "

Fibromyalgia latest research papers on PubMed

There are more articles about fibromyalgia, but of the recent research papers the following look the most relevent to me and anyone diagnosed with fibromyalgia or caring for someone with fibro...Entrez PubMed:

"Fibromyalgia: understanding the disease and its social implications]
Rev Esp Anestesiol Reanim. 2006 Jan;53(1):1-3. Spanish. PMID: 16475632

Depression and psychosocial factors in Turkish women with fibromyalgia syndrome.
Eura Medicophys. 2005 Dec;41(4):309-13. PMID: 16474286 [PubMed - in process]

Clinical and psychosocial characteristics of subjects with fbromyalgia. Impact of the diagnosis on patients' activities]

New strategies in evaluation of therapeutic efficacy in fibromyalgia syndrome.

Multidisciplinary approaches for management of fibromyalgia.

Complementary and alternative medical therapies in fibromyalgia

Monday, February 20, 2006

Chronic fatigue syndrome The Lancet

Well worth reading for up to date fact and opinions - especially the comments by Douglas Fraser

The Lancet: "Summary
During the past two decades, there has been heated debate about chronic fatigue syndrome (CFS) among researchers, practitioners, and patients. Few illnesses have been discussed so extensively. The existence of the disorder has been questioned, its underlying pathophysiology debated, and an effective treatment opposed; patients' organisations have participated in scientific discussions. In this review, we look back on several controversies over CFS with respect to its definition, diagnosis, pathophysiology, and treatment. We review issues of epidemiology and clinical manifestations, focusing on the scientific status of CFS. Modern neuroscience and genetics research offer interesting findings for new hypotheses on the aetiology and pathogenesis of the illness. We also discuss promising future issues, such as psychopathophysiology and mechanisms of improvement, and suggest multidisciplinary prospective studies of CFS and fatigue in the general population."

"It is time therefore, to reject the misleading biopsychosocial CBT-associated "illness model", with it's barely concealed misanthropic,moralising overtones, and to remind those who seek to interfere with theirfellow human being's "ideas", "cognitions", "beliefs", to "educate" doctors,to alter the "patient's environment", to isolate people from their normalsupport frameworks, to manipulate those frameworks whilst insinuating impure motives in those affected by ME/CFS, that no matter how subtlety presented,these are coercive techniques as old as humanity itself, and none too
dissimilar from the "scientifically therapeutic" techniques of "re-education" or "thought reform" that the psychiatrist Robert Jay Lifton identified and delineated in the context of dissidence within Communist China, consisting of (eight) rather uncomfortably similar psychological themes which in combination "create an atmosphere which may temporarily
energize or exhilarate, but which at the same time poses the gravest of human threats" (3)."

Is it Lupus, FM or Both

Current Newsletter: "Is it possible to have symptoms of lupus, but actually have fibromyalgia?

A: Figuring out whether a patient has lupus, fibromyalgia or both�which is entirely possible - requires a thorough medical history, physical examination and laboratory tests. Diagnosing lupus and fibromyalgia can be difficult because the conditions share some symptoms.

During the medical history, fibromyalgia patients usually describe fatigue and a generalized muscle pain or soreness of the muscles that often is made worse by lack of quality sleep. Lupus patients may also have fatigue and muscle soreness, but initial symptoms may include a rash across the cheeks and nose that gets worse in sunlight, kidney problems, difficulty breathing or a blood clot, stroke or heart attack."

Friday, February 10, 2006

fibromyalgia itching ; scratching, skin complaints, back itch...

Interesting, yet another symptom I have endured AND blamed either my alcohol intake or food additives for!

fibromyalgia itching ; scratching, skin complaints, back itch...: "Itching is just one of a number of skin complaints that Fibromyalgia sufferers can suffer from. And it's apparently one of the most common skin problems among Fibromyalgia sufferers...Do you have Fibromyalgia? Do you find yourself scratching all the time? Do you have dry, itchy skin? Have you developed itchy skin rashes?

Maybe you have back itch? Or itching ears? Or maybe you sometimes even feel that horrible itching sensation all over - as if there are ants crawling all over your body…

Category: Fibromyalgia : fibromyalgia itching , fibromyalgia back itch , scratching , skin complaints , skin problems
Common misspellings of fibromyalgia : fibro myalga, fibro mialga, fibro maligia, fibro mailgia, fibro mayaglia, fibro milagia, fibro myealgeia, fibro myalja, fibro myalgea"

Concerns about Commercial Conflicts of Interest

Concerns about Commercial Conflicts of Interest: Info "relevant to the Gibson Inquiry, specifically the continued ignoring by the Department of Work and Pensions (DWP) and its commercial advisers of the compelling scientific evidence that myalgic encephalomyelitis / chronic fatigue syndrome is not a primary psychiatric disorder. If eligibility for certain benefits becomes contingent upon the intended implementation of compulsory psychiatric �rehabilitation� regimes, in cases of authentic ME/CFS it is likely to result in serious relapse that may be life-long (and may in some cases even result in death)"

Two major concerns which interest me in particular:
"Senior Psychiatrists collude with Medical Insurers to classify ME/CFS as a psychiatric disorder
Government Departments recognise ME/CFS as an organic illness"

(a) the commercial conflict of interest underlying the Department of Work and Pensions (DWP) Disability Handbook entry on myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) and

(b) some aspects of the impending Incapacity Benefit reform.

It is of particular concern that:

as far as ME/CFS is concerned (and in general), the proposed psychiatric “rehabilitation” regimes ie. CBT (cognitive behavioural therapy) and GET (graded exercise therapy) that are to be imposed on UK claimants are poorly researched; they have already been shown to be of no lasting benefit, and they may be harmful: in four surveys of a total of 3,074 ME/CFS patients, 77% of those who had tried CBT found that it either made no difference or made things worse, and of the 1,467 patients who had tried a graded exercise “rehabilitation” regime, 48% found it to be the most harmful intervention

financial compulsion will rob claimants of their right to give free consent to medical treatment
the treatment regime of the patient’s own doctor will be overridden
patients with no psychiatric history will be forced to attend mental health units

Since the involvement of UNUMProvident in the UK welfare system, so-called “medically unexplained” disorders with no definitive diagnostic test have become a prime target for the refusal and withdrawal of not only State sickness and disability benefits but also of medical insurance benefits: myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) has been specifically targeted by psychiatrists from the “Wessely School”, so named after its most notorious activist Professor Simon Wessely, who is on record as stating that ME does not exist.

Wessely School psychiatrists are heavily involved with UNUM and with the medical insurance industry in general; insurance companies in addition to UNUM with which they are known to be directly involved include Swiss Life, Canada Life, Norwich Union, Allied Dunbar, Sun Alliance, Skandia, Zurich Life, and Permanent Insurance, and as re-insurers, the massive Swiss Re (whose building in London has been dubbed the “gherkin”). For further information on the involvement of Wessely School psychiatrists with the insurance industry, see


Wessely School psychiatrists have also been zealous in their efforts to remove ME/CFS from the World Health Organisation (WHO) formal classification as a neurological disorder and to get it re-classified as a “mental” disorder. If a definitive test existed, it would be impossible to refute the serious organic pathology that has been internationally demonstrated to underpin ME/CFS. Without such a definitive test, Wessely School psychiatrists are more likely to be successful in their aim of re-classifying ME/CFS as a “mental” disorder, with resultant profits for their paymasters, because “mental” disorders are excluded from insurance cover. On the other hand, if the correct investigations were permitted to be carried out in the UK, and if the evidence of complex multi-system abnormalities was allowed to surface, then the psychiatrists’ paymasters could not legitimately disregard such evidence and company profits would plummet. The insurance industry is determined that this must not happen: UNUM’s “Chronic Fatigue Syndrome Management Plan” (dated 4th April 1995 and authored by Dr Carolyn L Jackson) makes this clear: “UNUM stands to lose millions if we do not move quickly to address this increasing problem”.

If those with ME/CFS who are incapable of work are deemed ineligible for State disability benefits, and if their medical insurance company refuses to pay out, what happens to them? In 21st century Britain, unless those with ME/CFS accept that they have a mental / behavioural disorder, with consequent loss of higher-rate State benefits for which they ought to qualify, they are simply abandoned, because the UK DWP has effectively sanctioned the withdrawal of support from those who most need it.

All....This is despite the fact that the same Government bodies are on official record on many occasions as accepting that ME/CFS is an organic disorder.

Government Departments recognise ME/CFS as an organic disorder
ME was recognised as a physical disorder on 27th November 1987 (Hansard: HC353)

Dr Peter Dewis from the DWP / DLA Advisory Board (who, together with Professor Mansel Aylward authored the Disability Handbook and is now Chief Medical Officer at UNUMProvident – see below) confirmed that before Attendance Allowance became the Disabled Living Allowance (DLA), decisions on eligibility for State sickness and disability benefits were made by doctors (hence the “Handbook for Delegated Medical Practitioners”), but since the advent of DLA, such decisions are now made by non-medical personnel, and the “Disability Handbook” is a guide for these non-medical decision-makers.

Members of Parliament are on record as being gravely concerned about the difficulties their constituents with ME/CFS face with UNUM, as recorded in the House of Commons debate chaired by Sir Alan Haselhurst on 21st December 1999..

In the 2004 “Fitness for Work” Handbook (the definitive text on fitness for work assessment), chronic fatigue syndrome (ME) appears in the chapter on ‘Psychiatric Disorders’.

On 28th June 2004 the Minister for the Disabled, Maria Eagle MP (part of the team running the DWP) was asked by ME Association Trustee Mrs Angela Flack why unfair obstacles are placed on people with ME/CFS to prove their illness beyond doubt, mostly with little support from GPs, social workers and occupational therapists, who themselves have little knowledge of the condition. Maria Eagle then invited the ME Association to give her proof that the DWP’s Disability Handbook did not accurately reflect the severe disabling effects of ME.

Despite this invitation, it seems that the evidence provided has been consistently ignored and that the psychiatric bias continues to dominate DWP thinking about ME/CFS.

The ME Association magazine “ME Essential” (October 2004, page 2) reported that new DWP proposals would force those who claim Incapacity Benefit to have a medical check-up every three months and to undergo “continuous reassessment”. If claimants turn down what the DWP deemed to be “suitable” work, their benefits could be axed altogether. An ME Association member from Lincoln, Mrs Mary Daley, wrote: “I claim the benefit and find the annual review stressful enough. The new proposals will mean a continuous review and a medical every three months. These changes amount to harassment of very ill people. ME sufferers have a hard enough time claiming their rightful benefits, and then to be physically and mentally tortured in this way is a terrible prospect”.

On 10th June 2005, new draft Guidelines on the eligibility of those with ME/CFS for State disability benefits were handed out at the close of a meeting held at the DWP. The new draft revision had been drawn up by the “CFS Group” at the DWP to replace the existing entry in their Decision-Makers’ Handbook; the draft Guidelines were handed out on the basis that their circulation was to be restricted to those at the meeting.

However, this draft version has been obtained and is now available to members of the public through the good auspices of Steve Donnison, webmaster at www.benefitsandwork.co.uk, to whom grateful acknowledgement is made. Enquiries should be directed to info@benefitsandwork.co.uk .

It has been ascertained that the group responsible for this draft consists mostly of those whose psychiatric bias is well known: as a result the Guidelines on ME/CFS are extremely biased, and in many respects demonstrably misleading and erroneous. The group is led by Peter White, Professor of Psychological Medicine at St Bartholomew’s and The London Queen Mary School of Medicine and Dentistry; other members include Professor Tom Sensky from the Department of Psychological Medicine, Imperial College, London (representing the DLAAB); Dr William Bruce-Jones, Consultant and Liaison Psychiatrist, Avon & Wiltshire Partnership Trust; Dr AK Clarke, Medical Director, Royal National Hospital for Rheumatic Diseases, Bath (with a physiotherapist and an occupational therapist from his unit), but no immunologist, neurologist or vascular medicine specialist with published expertise in ME/CFS...

“Clinical examination: specifically there are no abnormal signs found in the neurological or musculoskeletal systems” (this is untrue: there are definite abnormalities in these systems, for example, an abnormal Romberg test; nystagmus; altered tandem gait; ataxia; neuromuscular incoordination; typical cogwheel movement of both legs, course tremor of hands when arms are held outstretched, discolouration of the skin with autonomic circulatory changes indicating abnormal vaso-receptor control etc)

“Neuromuscular function is normal” (this is untrue)

“Impairment of cognitive function (is) usually only mild” (this is untrue)