The Hummingbirds' Foundation for M.E.

The Hummingbirds' Foundation for M.E. (HFME) is fighting for the recognition of M.E.,
and for patients to be accorded the same basic human rights as those with similar
disabling and potentially fatal neurological diseases such as M.S.

Articles sorted by author: the Crowhursts

An important note:

Before reading this research/advocacy information given in the links below, please be aware of the following facts:

1. Myalgic Encephalomyelitis and ‘Chronic Fatigue Syndrome’ are not synonymous terms. The overwhelming majority of research on ‘CFS’ or ‘CFIDS’ or ‘ME/CFS’ or ‘CFS/ME’ or ‘ICD-CFS’ does not involve M.E. patients and is not relevant in any way to M.E. patients. If the M.E. community were to reject all ‘CFS’ labelled research as ‘only relating to ‘CFS’ patients’ (including research which describes those abnormalities/characteristics unique to M.E. patients), however, this would seem to support the myth that ‘CFS’ is just a ‘watered down’ definition of M.E. and that M.E. and ‘CFS’ are virtually the same thing and share many characteristics.

A very small number of ‘CFS’ studies refer in part to people with M.E. but it may not always be clear which parts refer to M.E. The
A warning on ‘CFS’ and ‘ME/CFS’ research and advocacy paper is recommended reading and includes a checklist to help readers assess the relevance of individual ‘CFS’ studies to M.E. (if any) and explains some of the problems with this heterogeneous and skewed research.

In future, it is essential that M.E. research again be conducted using only M.E. defined patients and using only the term M.E. The bogus, financially-motivated disease category of ‘CFS’ must be abandoned.

2. The research referred to on this website varies considerably in quality. Some is of a high scientific standard and relates wholly to M.E. and uses the correct terminology. Other studies are included which may only have partial or minor possible relevance to M.E., use unscientific terms/concepts such as ‘CFS,’ ‘ME/CFS,’ ‘CFS/ME,’ ‘CFIDS’ or Myalgic ‘Encephalopathy’ and also include a significant amount of misinformation. Before reading this research it is also essential that the reader be aware of the most commonly used ‘CFS’ propaganda, as explained in A warning on ‘CFS’ and ‘ME/CFS’ research and advocacy and in more detail in Putting research and articles on Myalgic Encephalomyelitis into context.

Articles by the Crowhursts

Submission To The Parliamentary Inquiry Into Progress In The Scientific Research Of M.E. By The 25% ME Group (Word format) Comments from Greg Crowhurst December 2005

Includes comments from 25% members on CBT, GET and the effect of the ‘psychiatric’ approach to M.E.

 "This will be revealed as one of the biggest medical scandals in history" declared a severe ME sufferer. This Report, based on an email survey of sixty- four severely ill, classical, Ramsay-defined ME/CFS sufferers, with a "multiplicity of symptoms" including, muscle phenomena, circulatory impairment and cerebral dysfunction (Ramsay 1988), was conducted at short notice in December 2005 especially for the Parliamentary Inquiry, by the 25% Severe ME Group.

"It is bad having severe ME but not as bad as being treated as a time wasting malingerer by the medical profession and the Department of Works and Pensions", remarked one respondent.

A respondent describes how "This illness makes life hard enough as it is. It is so much worse that, whilst there is the ability to investigate this illness, that opportunity is being deliberately ignored. The choice the medical profession is making to treat a physical illness with psycho-nonsense is never going to cure anybody."



ME Awareness: Check out the facts Greg & Linda Crowhurst April 20th 2008

You simply cannot sit safely on the fence believing that you are being reasonable. There is no balance to be struck between psycho-corporatism and a true biomedical approach. People are dying right now from this illness.

Martin Luther King, writing from his Birmingham prison cell, in the midst of an equally impossible struggle commented that "I have been gravely disappointed with the white moderate.

I have almost reached the regrettable conclusion that the Negro's great stumbling block in his stride towards freedom is not the White Citizen's Councilor or the Ku Klux Klanner, but the white moderate who is more devoted to "order" than to justice, who prefers a negative peace which is the absence of tension to a positive peace which is the presence of justice, who constantly says, "I agree with you in the goal you seek but I cannot agree with your methods of direct action" who paternalistically believes he can set the timetable for another man's freedom; who lives by a mythical concept of time and who constantly advises the Negro to wait for a more "convenient season".

Shallow understanding from people of good will is more frustrating than absolute misunderstanding from people of ill will. Lukewarm acceptance is more bewildering than outright rejection."

(Why We can't Wait, Letter from a Birmingham Jail, Harper & Row 1963)

The greatest threat to people with ME right now, comes not just from the psycho-corporate lobby; they are so easily exposed. It comes from the moderates, the lukewarmers, the pragmatists, the compromisers right at the centre; who cannot see the damage they are doing by negotiating the truth away.

Beware.


Be a trouble maker by Greg Crowhurst

We have to get in there and take on the PCT’s and the SHA’s.

It means day-to-day dedication to the task. It means incredible courage and determination and above all a complete refusal to compromise on the truth that ME is a physical, neurological disease.

The corporation’s grip on the State is growing ever more powerful. Most citizen’s movements, says George Monbiot (Captive State, Pan 2000), are weak and to take on the corporations means also confronting "the states that have succumbed to their domination" This can only be challenged, says Monbiot, by "troublemaking – the sole guarantor of liberty".

As freed slave and anti-slavery campaigner, Frederick Douglas, wrote so powerfully in 1857 : "Those who profess to favour freedom and yet depreciate agitation, are men who want crops without plowing up the ground. They want rain without thunder and lightning…Power concedes nothing without a demand. It never did and it never will".


A victory Greg Crowhurst Nov 7 2007

14 years of living with severe ME ;  poverty, a painful, paralysed struggle, every single moment. It was our wedding anniversary yesterday.

What a particularly exquisite joy it was then to  witness   the BBC's Marl Daley, famous in the UK for his expose of institutional racism in the  Police force,  launch into a devastating critique of UNUM, on the news at 10 last night.

UNUM 's extraordinary , growing,  life-destroying influence over ME sufferer's lives has been the bane of our life, for well over a decade.


This Desert :ME under New Labour and Unum. Greg Crowhurst Oct 10th  2007

I fear things are getting much worse for people with ME in the UK. This article tries to show how.


The reality of living with severe Myalgic Encephalomyelitis 2 September 2007 Linda A Crowhurst, Severe ME sufferer Unable to work for 16 years

The recently published NICE guidelines (Aug 22) on "CFS/ME"are shameful, they ,offer nothing to true ME sufferers.

ME; it is waking up in intense unbearable unbelievable pain for 14 years and knowing it's going to probably be the same forever not because it has to be like that but because it is being manipulated like that.

Having severe ME is unimaginable ; the experience is so different , intense and unremitting than anything I have ever experienced before.

Why do I have to accept the denial of the WHO categorising of my neurological disease in the NICE guidelines and the promotion of a biopsychosocial psychiatrically motivated approach to my disease, when it is not a mental health illness?

Why do I have to accept a complete lack of biomedical clinics and a derth of biomedical clinicians in dealing with my disease?

Why is there no government backing for physical research? Why are People who have vested interests in insurance companies allowed to be advisors to DWP regarding guidance in my illness?

How can the psychiatrists be allowed to define inaccurately my disease with too few symptoms and promote a vague symptom of fatigue that is not the primary dysfunction in ME? How can the psychiatric lobby get away with changing the name to CFS to ensure this wrong focus? How can the neurological nature of this illness be dismissed and people who have neurological symptoms be denied a proper service because of them? How can inappropriate therapeutic techniques be promoted by NICE when they are not wanted by people with ME as they make them more ill and disabled potentially if not actually?

Why is the ME community so divided when the issues are so clear?

People with neurological Encephalomyelitis are physically ill.

They need biomedical research and new biomedical treatments developing. They need physical research to understand the disease and develop a true identification process. They need accurate diagnostic criteria, accurate physical diagnosis and prognosis.

We need to stand up for the truth of our disease.

We need to speak out the truth of this devastating physical illness and we need to be strong together.

We need to demand that the focus on fatigue be stopped and stopped now.


Reference:
*Letter FROM the Royal Society of Medicine*
Help ME Circle, 13 May 2008 - See Co-Cure:
http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0805b&L=co-cure&T=0&P=5380

Stand back a minute! A Cartesian reflection on the RSM letter to Jan van Roijen Greg Crowhurst, 14th May 2008

On April 28 2008 there was a one-sided, closed, psychiatrically biased conference, in London, on CFS. The RSM believes, in a letter to Jan van Roijen, that all the content was evidence-based and of high scientific quality; an extraordinary claim to make given that the conference was claiming that ME no longer exists.

Peter White is reported to have referred in his opening speech, to the philosopher Descartes; It is a particularly alarming statement, because it could be inferred to mean that the split between psychiatry and the biomedical reality of ME cannot be safely used to protect people with ME anymore from the involvement of psychiatry in the treatment of their illness:

'The ME-CFS debate may be remembered in future more as one of the tipping points for the rejection of Cartesian dualism than for diseases that lie within'.

Actually Descartes, if he had been present at the Conference, might well have responded to this statement by exclaiming - wow, hold on, stand back a minute !

He has very much indeed to contribute to the current ME debate.

A gifted mathematician as well as a brilliant philosopher, Descartes is the person who invented analytic geometry and the graph (those two familiar lines on a graph, the Cartesian co-ordinates, are named after him).

Far more importantly, Descartes laid out a sound method for acquiring  certain knowledge about the world; so sound in fact that he built the basis upon which modern science would subsequently be constructed; a basis that seems to have been thoroughly shattered by the psychiatric lobby in their treatment of ME.

It is indeed instructive to consider the nature of Cartesian dualism and how one might set about overcoming it.

By truth or by fantasy? That, in relation to the psychiatric lobby, is the all-important question.

Is it by paying rigorous attention to the physical/medical research and experience of people with ME, or is it about plucking an hypothesis seemingly out of the air?

Descartes provides the answer.

Time and time again, this wonderfully bold, easy to read writer stresses the importance of disciplined, critical rationality.

A scientist, he stated, should analyse the world uncontaminated by any dogma or propaganda. Can that be safely said of the psychiatric lobby and their relationship with the Medical Insurance Industry?

Descartes would most certainly advise the psychiatric lobby to pay great attention to the facts: like severe ME patient's personal experience of pain, numbness, spasms and other serious neurological and physical symptoms, which can be perceived clearly and distinctly and analysed in quantitative terms, using experiment and hypothesis, which they ignore.

Psychiatrys perennial problem it seems is its "relatively underdeveloped status as a science" (KW Fulford, AY Smirnov and E Snow 1993*) leaving it with an undue reliance upon consensual definition, rather than hard science, to determine disorders; a consensus that critics say, more often than not, is determined by GlaxoSmithKlines or UNUM's billions of dollars.

Consensus is not necessarily truth.

The original term "Chronic Fatigue Syndrome", for example, rather than arising out of careful Cartesian analysis was simply the working title of a study that was developed in the 1980s on the basis of some cluster outbreaks in the USA thought to be due  to Epstein Barr Virus.

The trouble is this throwaway title stuck with the most awful consequences.

The criteria of CFS, according to Lajla Marks (2007) were never meant to cover ME.

Inconceivably, although the World Health organisation classified  Myalgic Encephalomyelitis in 1969 in their international classification of diseases (ICD) as a neurological disease, listed in ICD-10, code G93.3 under "Other diseases in the brain", in the USA they just kept on focussing upon "fatigue" and ignoring the neurological and neurocognitive symptoms, which are the main symptoms in ME, states Marks.

Even in their revised criteria, Fukuda et al in 1994, in the USA, chose not to "include the characteristic neurological and neurocognitive symptoms, described by Ramsay and others before him - symptoms that were of vital significance for the understanding of the disease and for further research and treatment."

Today, CFS is being forcefully promoted, rather than  ME.

ME, according to a report on the RSM Conference, no longer exists; yet what has reputedly eradicated ME from the world, apart from the propaganda of the psychiatric lobby?

Nothing it seems, as physical government backed research for it does not exist.

There has been no programme of medical eradication or vaccine development, for example, which is the usual course to eradicate a serious disease.

The fears of a further outbreak of epidemic proportion have been silenced and argued away, based on opinion rather than biomedical science - how can you have an epidemic of psychiatric mental health issues? It is not the same thing at all.


No risk there then.

People with real neurological ME are today cleverly excluded from the ME now called CFS clinics, categorically because they have neurological symptoms, which are purported to no longer exist, except in a historical sense.


Descartes would, presumably, be shaking his head  in some  bewilderment.

Departments of Neurology across the land, who should know better, are often so heavily influenced by psychiatric propaganda that they refuse to validate neurological ME so that the  patients reality becomes a torment of real physical, yet completely unexplored, unexplained, untreated and invalidated symptoms.

People with real ME are not included in the data that would prove that GET and CBT do not work for ME, because they are excluded under the psychiatric- based criteria.

CFS excludes neurological symptoms from its criteria and focuses upon fatigue, a symptom not necessarily present and actually post -exertional in nature in true ME. Tiredness and deconditioning come no where near this, as a definition of what an ME sufferer experiences.

Yet the psychiatric lobby have taken the name ME, incorporated it into CFS, accepted the funding to help the people, then in reality denied them access by denying their neurological  disease.


In business this would be deemed a successful hostile take-over.

It can be safely reasoned then that Descartes would not have been behind the take over of a valid biological disease by psychiatry, especially one that is based on not a shred of solid empirical evidence

Negated and excluded, people with severe ME are left, under the psychiatric lobby's influence with no viable option or alternative. The psychiatrists have occupied the central ground of ME and excluded people with ME from it at the same time.


It is not too hard to imagine what Descartes might  have to say about  this deadly state of affairs.

He might well draw the psychiatric lobby's attention to how the study of "Myalgic Encephalomyelitis" (ME), has always been  based on clinical findings of signs of dysfunction in the Central Nervous System (CNS) and over the years has been shown, without the slightest doubt, to be a physical disease.

He would probably ask, alongside Margaret Williams (2004),: Can White really be looking at patients with ME / ICD-CFS or is he looking at those with a primary complaint of the "Wessely School" construct, namely, one end of a continuum of "medically unexplained fatigue"?


It is not too hard to imagine Descartes agreeing wholeheartedly with Dr Derek Englander's, March 22 2008 letter to the  Daily Telegraph on the RSM Conference, citing as arrogant, how obscurity over the cause of ME has been masterfully used by psychiatrists to claim that  the disease is a manifestation of a psychiatric condition, leading to an imagined problem.

The lesson appears to be, abandon rigourous Cartesian rationality at your peril.

People with the WHO defined neurological disease ME, caused by an enterovirus, especially those who have more recently become ill now face decades of suffering from a supposedly non illness, without validation, treatment or hope of a cure and without appropriate and proper medical tests or care.

Under the psychiatric lobby's influence there is:

* No way out for people with neurological ME.
* No valid tests.
* No valid treatments.
* No hope.
* No acknowledgement of their suffering.
* No alleviation of symptoms.
* No biomedical consultation.
* No development of an appropriate  biomedical service.
* Only intense suffering, hopelessness and even death.

 

And all of this because of psychiatrys irrational grip .

Forget Descartes dualism of mind and body too soon and you create a living hell for people too ill to speak up, too poor to mount campaigns.

It is true that we are indeed approaching a tipping point.

The tipping point must be the primacy of the individual severe ME patients experience; which will rid ME once and for all of psychiatry's influence and herald in a long overdue era of proper recognition, biomedical treatment and sound clinical  research.

Cogito ergo sum.: I think therefore I am; Descartes powerful  affirmation of human experience and being, equips us to critically view the tragic psychiatric supremacy that devastates so many ME patients lives, and perceive the power-game that is being played out, because it affirms the reality and validity of the  persons experience, which the psychiatric lobby fails to do .

As for resolving any mind/body dualism (the Cartesian split), the psychiatric lobby, on such flimsy foundations, is not very likely to  achieve this most holy of grails.


References

KW Fulford, AY Smirnov and E Snow (1993) Concepts
of disease and the abuse of psychiatry in the USSR
University Department of Psychiatry, Warneford
Hospital, Oxford.

The British Journal of Psychiatry 162: 801-810 (1993)
http://bjp.rcpsych.org/cgi/content/abstract/162/6/801?ck=nck

Marks L (2007) What is ME?
http://mesite.dk/WhatIsME.htm

Williams M (2004) Paradoxical Proliferation of
Professorial Psychiatry?
http://www.meactionuk.org.uk/Paradoxical_Proliferation_of_Professorial_Psychiatry.htm


There is a place beyond anger Greg Crowhurst 9th June 2008


Little Help for ME sufferers Linda Crowhurst Eastern Daily Press June 25th 2008 p. 18


Videos by Linda and Greg Crowhurst: see Greg Crowhurst's video diary


See also: www.metrainingco.org.uk 

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The book 'Caring For The M.E. Patient' by Jodi Bassett includes a Foreword by international M.E. expert Dr Byron Hyde.

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