Comment by ShowalterdontlikeME that says it all …

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“The Wesselyian school of thought, for all they have said and written over the last two decades, have never really explained in reasonable terms why they deny the existence of ME. No apology from them would ever be adequate. Someday they will be seen for what they are – dishonourable charlatans.
Deepest sympathy to Nicola’s family and friends.”

The Lightning Process …

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By:AYLWIN CATCHPOLE, British Columbia.

Just a `pyramid-selling scam’

IF THE Lightning Process worked for Ms Gibson, she never had ME in the first place. Her understanding isn’t congruent with 60 years of biomedical research into what the World Health Organisation defines as a neurological disease.

Chronic fatigue syndrome is the unscientific moniker ascribed to a heterogeneous group of illnesses and excludes the crucial aspects of the infectiousness of ME, as well as the brain injury from which symptoms find their origins. There is no correlation between psychiatric disease and ME, unlike the bogus category of chronic fatigue syndrome — so much for the yuppie flu vs couch potato theory.
Adrenaline metabolism is involved, but is only one, relatively minor, aspect.

How could a three-day ‘process’ cure anyone of the catastrophic effects of ME on the immune system, cardiovascular system, endocrine system, brain injury, mitochondria) dysfunction and multiple co-infections? The Lightning Process is little more than a pyramid-selling style money scam with many of the hallmarks of a cult.

In MEmoriam ME sufferer Nicola McNougher

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The Bromsgrove Standard reports that “the chairman of the Worcestershire ME Support Group Ian Logan has called for more funding for research into the debilitating illness.”

“It comes just days after the inquest into the death of Bromsgrove ME sufferer Nicola McNougher who travelled to Switzerland to take her own life, using the country’s legal ‘assisted suicide’ system, after the condition got too much for her.

She has now left her body tissue to the ME Association so research can be carried out into the illness, what causes it and, maybe, find a cure.”

The MEA in the House of Lords earlier this week …

Monday, 02 June 2008

Representatives from BRAME (Christine and Tanya Harrison) and The ME Association were present ‘Below the Bar’ in the House of Lords on Monday 2 June to listen to a series of questions to Health Minister, Lord Darzi, on the subject of ME/CFS. There was a very good attendance, including some well known parliamentarians, from all sides of the House of Lords.

SIMON WESSELY FOODIE BOY

Horseradish graters, meat hooks, outsize ladles … Why is …

This is the only reasonable response to someone who after 20 odd years still doesn’t want to acknowledge that Chronic Fatigue, Chronic Fatigue Syndrome and ME are three different entities.

Jane Colby’s letter in The Sun: CFS is a BARMY name !!!

Letters page, The Sun, May 12:

Dear Sir,

It was a bad day for children when ME got called by the barmy name ‘Chronic
fatigue syndrome’. Some of our children can’t speak or swallow and have to
be tube fed. That is so not ‘fatigue’. That is devastation.

Jane Colby
Executive Director
The Young ME Sufferers Trust

Professor White and redefining ME as a psycho illness at the RSM …

Report of the presentation given by Professor Peter White by Dr Charles Shepherd Hon Medical (CS)Adviser, ME Association:

NAME:
Peter White,
Professor of Medicine at Bart’s and the London School of Medicine (psychiatrist)

PRESENTATION TITLE:
What is Chronic Fatigue Syndrome?
And What is ME?

What is CFS?

Peter White started off by summarising the five ways in which he believed chronic fatigue and chronic fatigue syndrome, the name preferred by most physicians, can be classified using ICD10:

F48: neurasthenia
F45.3 somatoform autonomic dysfunction
F45.9 somatoform disorder, unspecified
R53 malaise and fatigue
R54 senile asthenia
[Dr Shepherd’s note: The only place that ME appears in ICD10 is in the neurology chapter under G93:3; CFS is also indexed to G93:3]

He then summarised the 7 different research criteria that have been published for CFS in adults and children:

CDC Holmes
Australian
Oxford
London
CDC 1994
CDC Revised 2003
However, as there is no evidence of a CDC defined CFS out there in the general population, this is not a useful criteria to use for clinical diagnosis.

Peter White also pointed out how research (eg the Witchita epidemiological study) indicates that for every patient with CDC diagnosed CFS there are far more people in the population with chronic disabling fatigue.

He then considered the three different clinical definitions that can be applied to CFS:

Canadian Criteria
NICE criteria (ie fatigue plus one symptom from the NICE list)
Royal College of Paediatricians and Child Health criteria
and what he felt were their relative value in clinical practice, especially in regard to their use of lists of symptoms in addition to fatigue.

Peter White pointed out that as more symptoms are used to define a core illness the more likely it is that people with a psychiatric illness will be brought into the definition.

[CS note: Most members of the public probably don’t realise that as a rough rule of thumb many doctors work on roughly the same basis – the more ‘ non red flag’ symptoms someone has above 5 in number, the more likely they are to have a psychiatric illness.]

Peter White considered that the Canadian Criteria had too many symptoms (8 in all) from long lists of grouped symptoms – some of which (eg ataxia) had an uncertain relationship to CFS.

As a result he could not recommend the use of the Canadian Criteria for the clinical diagnosis of CFS.

The new NICE criteria, which only require fatigue plus four symptoms, allows a diagnosis to be made around four months and are, he felt, useful.

The RCPCH criteria were his ‘Gold Star’ choice when it came to making a clinical diagnosis of CFS.

What is ME?

Peter White gave a brief summary of events at the Royal Free Hospital back in 1955, the editorial in the Lancet introducing the term ME/myalgic encephalomyelitis, and pointed out that some of the clinical features of ME (eg cranial nerve palsies) were not seen in individual cases today.

ME implied an incurable organic neurological illness that was originally defined on the basis of symptoms and signs found in outbreaks/epidemics. However, a conference at the RSM in 1978 had helped to legitimise a move from ME being an illness that occurred in epidemics to an endemic one.

To back this up, part of the presentation on ME was accompanied by a slide using the front cover of the January issue of ME Essential magazine with a photo of a severely affected lady in a wheelchair.

Peter White believed (on the basis of a piece of research) that having a label of ME carried a worse prognosis than having a label of CFS.

ME is, therefore, a name/diagnosis that is not helpful for doctors to use.

Lumpers and Splitters

The final part of this presentation looked at the issue of lumping or splitting – in other words do conditions such as CFS form part of a spectrum of overlapping disorders or are they more distinct clinical entities?

Peter White’s conclusion is that CFS is likely to be heterogeneous (ie composed of diverse elements) in nature when it comes to pathophysiology/causation whereas it is more useful to regard CFS as homogeneous (ie of the same kind) when considering treatments.

Conclusion (Peter White):

‘The reality is that mind and body cannot be divided and illnesses such as CFS/ME involve “both”, like most chronic diseases. The ME-CFS debate may be remembered in future more as one of the tipping point for the rejection of Cartesian dualism than for diseases that lie within’.

What conclusion would be a doctor with no prior interest in ME/CFS come away with?

Had I been a doctor attending this meeting with no prior or specialist interest in ME/CFS I would have come away with the conclusion that:

CFS is by far the best name for this illness
CFS affects both mind and body
Research criteria for CFS aren’t helpful for making a clinical diagnosis
The best diagnostic criteria to use for making a diagnosis of CFS are those produced by NICE and the RCPCH
Canadian Criteria are not helpful for making a diagnosis of CFS

There is a safe and effective treatment for people with CFS: graded exercise therapy (he is funny that man, I must give him that, CBT is safe for CBT psychiatrists only, might I suggest he reads professor Wessely’s article that declares CBT to be utter useless unless you suffer from anxiety or fears……see my previous post…and GET is only safe if you DO NOT HAVE ME, a minor detail professor….. )

The term ME is best avoided as it refers to an illness with neurological signs that occurred in outbreaks some time ago – such as the one at the Royal Free Hospital
Giving people a label of ME, implying a serious and possibly incurable neurological disease, is likely to lead to a less favourable prognosis.

Had I been at the conference I would have known that CBT stands for telling porkies as Dr Speedy would say and for recreating and redefining a debilatating neurological illness into a mental health problem of which professor White is not sure what it is actually as he uses FIVE different diagnostic codes.

And that is why the general public wasn’t allowed access to the RSM……….. We might have loudly objected if we didn’t suffer from ME and quite a few of us are bedridden and suffer from hypersensitivity to noise.

But how would professor White know such a thing as he refuses to see people with (severe) ME yet he still has a delightful opinion about something he would not recognise if his whole family would go down with it, just like all the other CBT fanatics……….

A message from Sophia Mirza’s mother …

A message from Sophia’s mother

Today, 9am, sees the launch of a website I have created in memory of my beautiful daughter who died of Myalgic Encephalomyelitis. It deliberately coincides with a conference being held by the Royal Society of Medicine on the subject of ME/CFS to which many psychiatrists and
psychologists have been invited to speak.

ME is a physical illness but the problem facing most ME patients is that a psychological causation of their symptoms is part of the dogma that has been foisted on them by a very small but highly influential group of psychiatrists who have established
a niche market in what is a controversial but highly debilitating illness.

In June 2003 a warrant was granted through Brighton Magistrates Courtthat resulted in the sectioning of my daughter, Sophia Mirza, because she would not accept psychiatric treatment for her physical condition, Myalgic Encephalomyelitis (ME).

Despite our Solicitor being confident that there were no grounds for a warrant to be issued, a warrant was granted and my very ill daughter was sectioned against her will until a Tribunal sanctioned her release almost two weeks later.

My daughter never recovered from the shock of this incarceration and died in November 2005. The coroner’s verdict recorded that she died of CFS/ME.

Six doctors and a social worker were among the people who were involved
in Sophia’s case.

I have tried, without success, to gain justice from the GMC and Social Services over the dreadful treatment my daughter received, but to no avail.

I have written to two Attorney Generals, numerous MPs and solicitors -again with no result. It seems that ordinary people like me and my daughter can be treated in the most appalling way and no-one is accountable.

I have therefore decided to publish all letters and communications appertaining to my daughter’s ordeal at the hands of the authorities, in an effort to ensure that this should never happen again to someone suffering from ME.

I hope that the doctors and social workers involved in my daughter’s care will now reflect on what they did and learn from their mistakes and intransigence. I hope that other professionals will also learn
lessons from what I have published and that …..

Criona Wilson

28th April 2008

Wessely’s Way …

Margaret Williams and Professor Malcolm Hooper and their latest splendid article regarding the ways of the psychiatric lobby in treating ME….

• These are profoundly serious issues in which Professor Wessely seems to have been shown to be completely wrong,
• yet no-where has it been possible to find a retraction of, let alone an apology for, the incalculable damage that many people believe his misinformed opinions and policies have caused.
• Although psychiatric disorders are diagnosed on opinion and not on a definitive diagnostic test,
• Professor Wessely demands “evidence-based medicine” supported by a definitive test and specific biomarkers before he will accept the reality of ME/CFS.
• Whilst there is as yet no specific diagnostic test, there is an abundance of biomarkers which support the diagnosis,
• but Professor Wessely continues his determined and sustained denial and dismissal of this scientific evidence that clearly proves him to be wrong……….

ME sufferer ‘sacked for her illness,’ sues for £100,000

Tuesday, 08 April 2008
From the London Evening Standard, 8 April 2008.

A City worker with ME is suing a private equity fund for more than £100,000 after she was fired for being disabled, an industrial tribunal heard…….