Tuesday, October 16, 2007

Worldwide Epidemic Alert (cover up and striking medical info)


Atypical Polio was first identified in 1934 by a US Public Health Service investigation of the California outbreak. The Surgeon General took interest because of the very high number of medical personnel that were affected at the Los Angeles county hospital. The hospital was dealing with a large number of Polio cases that summer. This pattern of conditions was similar to many of the outbreaks of this rare disease that occurred over many years worldwide. The increased frequency of these outbreaks during the 1950’s brought greater interest to our disease. Dr Melvin Ramsay and others further defined the illness, and Myalgic Encephalomyelitis became the recognized term for this neurologic infectious disease.

A number of distinguished doctors continued to study and report on ME outbreaks, including Wallis, Acheson, Richardson, Parish, Henderson, Shelokov, Dowsett, Ryll, Behan, and Hyde. Their writings have brought us a wealth of information about Myalgic Encephalomyelitis, and a continuous historical record of our disease over many decades. Perhaps most impressive among them, Dr Richardson could attest that the cases he saw in the year 2000 have the same disease as patients that he and Dr Ramsay encountered in the 1950's: the neurological disease defined as Myalgic Encephalomyelitis.

In 1984 the Outbreak at Lake Tahoe heralded the emergence of the massive modern explosion of epidemic Myalgic Encephalomyelitis (ME). The response from the American Centers for Disease Control (CDC) was to initiate a tragic and devastating pattern of denial, misinformation and confusion about this disease. The capstone of this deception came in 1988, with the use of a vague definition, the fabrication of a "new" illness, CFS, along with a disorienting barrage of propaganda; instead of taking advantage of the advice of the medical experts and pursuing an immediate investigation of the devastating and growing ME epidemic. This effort included encouraging journals to never again publish articles about Myalgic Encephalomyelitis.

The immediate effect of these actions was to render the medical community ignorant of the true nature of this disease, and unaware of the established record of previous outbreaks and reports. With this new CFS label, no one would realize that it referred to a disease similar to multiple sclerosis, chronic polio encephalitis or today's Post Polio. Clearly, in effect a program of deception.

The invention of the vague "CFS" construct was immediately followed by the enlistment of psychiatrists, and a frenzy of redefinitions and expansion of the disease criteria. These redefinitions created an opportunity to identify as patients people with vague symptoms and psychiatric disorders if that was opportune for the researcher and sponsors. The effect was to pollute the subject pool and thus mystify the research data with conflicting results. This inclusion of the psychiatric brigade, that postulated theories, promoted confusion and distracted the focus away from the origins and infections, was to the delight and benefit of the Defense department and an Insurance industry driven to limit their liabilities.

These major moves to confound and confuse, and to use the cover of the psychological theories, can be seen as part of a deliberate protracted plan. The expansion of the criteria would help provide ammunition to distort or waterdown the growing scientific data. Data, that demonstrate the neurological, immunological and circulatory abnormalities that confirm the Ramsay clinical criteria of Myalgic Encephalomyelitis. For the insurance industry, the promotion of the psychological theories would provide them with opportunities to limit disability coverage and avoid liability payouts, and thus enhance the Bottom Line.

By 1994, these tactics of deception progressed further with the overhaul of the "CFS" criteria to increase the focus on fatigue and stress. All the key features that defined the neurological disease, ME, became optional. Meanwhile the number of ME victims succumbing to lymphoma, cancer and organ failure continued to mount.

In a stepwise progression, the CDC program to obscure the ME epidemic and the identity of the disease became broader and more determined. As doctors and studies revealed more and more of the features (brain scans of damage to the brain stem similar to polio) and considerable organic abnormalities of ME, so too, the designs and policies from the CDC to confuse became more elaborate. By 2000, the proposal included the creation of a wide umbrella of "unexplained" illnesses. Thereby, a method to truly bury the scientific and programmatic focus on the epidemic of ME amid a vast multitude of non-infectious, non-neurologic and many psychological conditions. A category of illnesses was created where confusion would reign and for which there would be little public interest or concern, once shrouded in the cloak of psychological theories.

A cover-up of grand scale is being institutionalized, with all the trappings of official interest, appeasement, advisory boards and workgroups, with zero funding for the infectious causes. All of these developments would be consistent with a plan to not discover the cause.

A government investigation (GAO) found that many millions of dollars authorized by Congress for CFS was diverted and not used for CFS research. In effect, years of effort and opportunity and hope were lost. Many patients died during this time.

The patient community is aware of the CDC's long-standing culture of bias regarding our disease: the refusal to investigate the outbreaks, the diversion of funding, the deceitful design of laboratory studies, to the offensive and derogatory attitudes toward patients. This attitude includes Reeves having fun by ridiculing patients at public meetings. The CDC history and their record with the ME epidemic, and experiences of ME patients, strongly suggests that in order to help save lives the CDC must be prohibited from any further involvement with any decisions about our disease.

It is clear to us that there is a fundamental conflict between the interests of the large and growing patient community disabled by ME with their desire for progress, and the program of the CDC, which has been to delay and derail the search for the cause and cure. The trademark of the CDC strategy to cause confusion and to conceal the identity of this ME epidemic was the change of name to Chronic Fatigue Syndrome.

The myriad series of events, delays, mistakes and supposed bungling is so extensive that it fills an entire book, Hillary Johnson's Osler's Web, published in 1996. This work is essential reading for understanding of the medical, social, and political history of ME, as well as providing a context for the current events.

The Disaster of Policy

Without regard to the origins of the ME epidemic or why the health authorities have worked to conceal the epidemic from the public, the effects these policies on patients is devastating. As patients we know the brutality of both the medical and social disasters imposed by the CDC policies. They advise doctors not to do any of the numerous tests that demonstrate the immune, infectious, central nervous system and metabolic abnormalities that can support the diagnosis. Where does this leave the doctor? If there are no specific tests recommended, then this advice can encourage the doctor to be skeptical that the condition exists, certainly could not be serious. Where does this leave the patient? Without complete medical investigation and tests, the doctor is unable to proceed with treatments.

Untrained and unsure of the disease, induced by CDC policy the patient is not treated, leading to further deterioration. Severely disabled and without the validation of medical testing, the patient is confronted with an impossible task to obtain disability assistance. Many become homeless and fatalities increase.

These policies have fostered a pervasive negative attitude toward ME Patients, of which we are well aware. There exists the common experience at hospitals: the snickering by staff when they learn you have "CFS". Or worse, the woman who went to hospital with severe respiratory symptoms, she was not properly treated, given a bottle of syrup and sent home. She died a few hours later. She was not properly treated because she was known at the hospital to have CFS.

Advance Your Understanding

At the present time the medical community is attempting to understand the symptoms of ME, attempting to gain entry with their tools and methods and physiologic models, in order to explain the disease to their colleagues. This means that at the present time it is the patient community that has a far greater understanding of the realities of ME than the medical community. To us, ME is no mystery, it is a lived experience. This is a fundamental aspect of the current situation that must be accepted in order to gain a better understanding of this disease. Doctors will learn much about this disease by listening to patients. Progress in ME treatment and research begs for the guidance of clinical science. The patients' experiences are a valuable source of valid data. Government officials will also learn much about this disease by listening to patient representatives directly affected by this disease and by the actions of this committee.

Advance your understanding. Recognize the epidemic of Myalgic Encephalomyelitis. Protect the Public.

Why We Are Here

We are here today, because a widespread epidemic of Myalgic Encephalomyelitis has descended upon this country. In less than twenty years time there are now over 1 million victims in the US alone and millions more worldwide. We are here because the national health agencies have not addressed this danger to the public health nor sought to find the cause or remedies for the suffering. We are here to inform the public that the national health agency policies are subjecting patients to a systematic denial of medical services and are maintaining doctors all across this country ignorant about this disease. These health agency policies have ensured that the cause of this disease is not discovered. These policies impact the health of thousands already disabled by ME and continue to place everyone at risk.

A principal issue must not be overlooked: Why has ME, which has an historical relationship to Polio, exploded into a worldwide epidemic, and what is the inordinate fear of the DHHS to recognize this and discover its cause?

For the health and welfare of our families, neighbors and fellow citizens everywhere, we insist that these matters be taken up now. We will not wait any longer for improvements, they must proceed now. Action to control this Epidemic must begin Now. It is time for truth and honesty. We are here for progress. Now!


TCJRME The Committee for Justice and Recognition of Myalgic Encephalomyelitis

Monday, October 15, 2007

CBT/GET "rehabilitation" -- success or failure?

A good analysis by Tom Kindlon

As has been previously been pointed out, last year a major report was
published on the Belgian CBT/GET Rehabilitation clinics for CFS.

It can be read, in French, at:
"Rapport d’évaluation concernant les centres de référence pour le syndrome
de fatigue chronique (SFC)"

or http://tinyurl.com/2t8em6

or, in Dutch, at:
Evaluatierapport over de referentiecentra voor het Chronisch
vermoeidheidssyndroom (CVS)
or http://tinyurl.com/35btan

Dr. Bart Stouten and I have sent three previous messages to Co-Cure on the
report on the Belgian Clinics with information in English:
m=16601 or http://tinyurl.com/2uqoqs

=16601 or http://tinyurl.com/366v5l .

or http://tinyurl.com/225qje

Dr Eleanor Stein also discussed them at the New Horizons: International
Conference on ME/CFS Biomedical Research


Over the weekend I noticed something that I thought some people might find
of interest:

Background Statistics:
- They found that 6% worked more after the rehabilitation and 10% worked
- They found that 5% who were not working at the start of the rehabilitation
were working at the end of it.
- They found that overall 27% of the people who did the programme were
working at the start of the programme and 25% of the same group of people
were working at the end.

This leads to the following observation:

The only people who could work less were people who were already working (as
the people who were doing 0 hours couldn't do less).

That means that we are only looking at 27% were working at the start:
So 10/27 = 37% of the people who were working at the start, were working
That's a large percentage.

Given that we know that 5% of the people who weren't working at the
start were working at the end, then they make up .05*.73=3.65% of
the 6% who were working more. So the existing workers only make up
2.35% of this (approx.). That means that, if one lets x=% working
more (of the people already working): x*(27/100)=2.35, x=8.70 so only 8.7%
of the people who were
already working, worked more compared to 37% working less!

[Full equation: (5*(73/100)) + (x*(27/100)) = 6]

Also given that 27% were working were working at the start and we
know 3.65% of the total are now working (the 5% of the 73% who
weren't working at the start), that would mean the total number working
would go up to 30.65% if nobody gave up work. But we know that only 25% of
the whole group are working at the end, so the drop
of 5.65% must come from the group who were working at the start.
This means that 5.65/27 = 20.93% of the people who were working at
the start had given up work completely by the end of the rehabilitation program.

To summarise - the new "data" in this message (not explicitly given in the
Effect on work status of the CBT/GET rehabilitation program
Of the people who were working at the start of the rehabilitation program,
after the 6-month program, 8.7% were working more and 37% were working less.

21% had stopped working totally.

Another interesting statistic is regarding the amount of people who
undertook full-time working (Table 70) who were not working at the start:
It shows that 8% of the people were working 12 months after they had
finished the program.  It says that 82% of the 22 who were working were
working part-time so only 18% were working full-time.  That means that of
the 266 who started the program, 266*.18 = 3.96  i.e. 4 people (as some
rounding) out of the 266 were working full time or 4/266 = 1.5%.

[Table 70 shows that the sort of people who weren't working at the start
were out of work for a variety of periods - they weren't all out of work a
long time so it can't be claimed from this that the treatment would be
effective (say) for people who had been out of work for 6-12 months:  Of the
44 people in this group, 0 people were working at the end of the program, 1
person (2%) was working (part-time or full-time) 6 months later and 1 person
(2%) was working (part-time or full-time) 12 months after the program.
We're not told which group of people were working full-time but as was
previously pointed out, only 18% of the people back working, were working

Remember that, as the report itself says:
"l’amélioration significative du fonctionnement socioprofessionnel des
patients est l’un des objectifs de la rééducation."
(rough translation) "significant improvement in the socioprofessional
functioning of the patients is one of the aims of the rehabilitation

Proviso: None of these figures are likely to be exactly correct as
we're dealing with round figures (6%, 10%, 25%, 27%) but useful to
show/quote in discussions/debates (esp. given all the hype about CBT and GET
for CFS).

Tom Kindlon

PS. Let me know if I've made a mistake anywhere.  French is not my first


Background information:

The numbers I've used are:
Table 69:
Top third of table
Activités professionnelles salariées

M1: at the start of the programme.
M2: immediatedly at the end.

Hours worked (% of 38 hour week): at start 18.3%; at end 14.9%.
Move across:
% who increased during the period (%+): 6%
% who did the same amount (%=): 84%
% who decreased during the period (%-): 10%

Table 70:
"Reprise de travail après la rééducation en fonction de la durée depuis que
les patients n’ont plus travaillé avant le début du programme de rééducation
de bilan"

Rough translation/meaning:
"The re-taking of work after the rehabilitation broken down by the length of
the time the patients had not worked before the start of the rehabilitation

"Pourcentage de patients n’effectuant aucune activité professionnelle
salariée au moment du programme de rééducation de bilan mais bien …"

Percentage of the patient who were not doing any paid/professional activity
at the start of the rehabilitation programme but

"… à la fin de la rééducation:"
at the end of the programme:

(6 months after: 8%; 12 months after 8%).

"82% des 22 patients reprenant le travail le font à temps partiel"
82% of the 22 patients retook part-time work.

Table 71:
"Evolution en ce qui concerne les sources de revenus des patients qui ont
suivi la rééducation. Comparaison des sources de
revenus des (mêmes) patients au moment du programme de rééducation de bilan
(= M1) et à la fin de la rééducation (= M2)."

Evolution with regard to the sources of income for patients who followed the
rehabilitation.  A comparison between the sources of income of the (same)
patients at the inception of the rehabilitation (denoted by M1) and at the
end of the rehabilitation programm (denoted by M2).

"Profession propre" = their own job.
M1: 27%
M2: 25%

* * *

The fact that people who WERE working before the therapy had to STOP working as a result of the therapy proves that CBT/GET is completely useless for CFS, and, in fact, makes things worse.

Most CFS/FMS patients I talk to say that they stopped working at their employer's behest: they were either fired or "requested to resign" (i.e., submit your resignation so the firm doesn't see its Unemployment Insurance premiums go up as a result of the firing).  So, the notion that we could work if we made the effort, or that we're "too lazy to work" is inaccurate; the simple fact is, we cannot do the work well enough to satisfy an employer.

Exercise has repeatedly been shown to objectively make CFS symptoms worse; there are testable chemical changes.  Yet, the CBT/GET lobby ignores those objective results and continues to tout the notion that coaxing and cajoling the patient to return to full activity is all that is necessary for a "cure".

This study of such rehabilitation proves that it's actually DIS-habilitation, resulting in patients being even less able to work after therapy.

I can tell you, after 7+ years of experimentation, there is a certain number of hours per week that I can work, and anything after that causes relapse.  There's no reason that someone with no supporting spouse and no SSDI benefits should choose to work less -- you need the money to pay your bills -- yet every time I made the effort to work enough hours to pay the bills, I wound up in bed for days. 

I don't need a doctor to encourage me to work ... if you have no one supporting you, the need to eat is quite enough encouragement to work.  What I need is a doctor to fix the problems that prevent me from working full-time, so that I can earn enough to pay the bills.  But when they're so focused on the idea that you simply "don't want to work", they're not addressing the viral cause for the symptoms, and if they don't fix the root of the problem, no amount of brainwashing is going to cure the patient enough to work.

A Most Personal Statement from Jane Bryant

           Jane Bryant - A Most Personal Statement<?XML:NAMESPACE PREFIX = O />

One Click Group Director Jane Bryant appeals to all the readers and contributors of One Click around the world and writes:

Dear All

For disenfranchised patients in conflict from many fields and the doctors,  scientists, politicians and disparate advocacy groups et al who support them, this short paper is perhaps one of the most important that you may ever read in your lifetime. 

This paper is about David against Goliath, harnessing the power of the internet and every other means possible to raise funds to prosecute the case for patients in conflict through the courts.  It is about previously powerless patients taking the reins. Never has this been done in this way before. The eyes of the world are upon us.  This initiative may well change the face of fundraising as we know it to be today.  We are making legal history.

I would like to start by thanking everybody who has lent of their help and support in so many ways for all this time in getting this challenge of the CFS/ME NICE Guidelines by Judicial Review ready for publication, action and off the ground. Hugs, slapped backs, victory signs, the lot!   Thank you!

I would particularly like to thank James Saunders, Senior Partner of Saunders Solicitors LLP, the firm conducting this case.  The firm's sincere belief in the justice that is well overdue to all those wronged patients in conflict has kept us all going on One Click in the darkest of days, to culminate in the legal action put before you today. 

Although this case is specifically about legally challenging the appalling National Institute for Health and Clinical Excellence (NICE) CFS/ME Guidelines, the implications and importance of it are in fact much wider than this.

Whether you fully understand the extensive history of the disgraceful saga of what has been done to ME/CFS labelled patients in the <?XML:NAMESPACE PREFIX = ST1 />UK and all over the world for so many years or not is almost irrelevant in this case.

This issue is about the rights of previously powerless patients to take their case to court and to let the judiciary decide.  Not the government and not the psychiatrists, but the law.  As such, this case has worldwide appeal to millions.

The Worldwide Appeal

Other groups from different countries - all of whom read and/or distribute One Click material - may well ask: what has this Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) UK legal battle got to do with us?  The answer is simple.  Everything. 

From Australia, New Zealand, the United States, France, Germany, Italy, Switzerland to name but a few countries and everywhere else, this case of the maltreatment of patients in conflict specifically concerns YOU.

ME/CFS misdiagnosis is being carried out on a massive scale around the world because it is an easy box to tick and a simple label to append. It is the ultimate wastepaper basket diagnosis.  From cancer to variantCreutzfeldt Jakob Disease (vCJD/Mad Cow), Multiple Sclerosis, Lupus, Parvovirus Infection, Guillam-Barre, Lyme Borreliosis, Stroke and so on as but a VERY few examples, many patients have died whilst under the exclusive care of the psychiatrists who go to extraordinary lengths to bury their mistakes. 

From vaccine damage to those sick children forcibly ripped from the arms of their parents by the State through the devastating secrecy of the Family Courts with the much discredited catch-all label of Munchausen Syndrome by Proxy/FII, this legal challenge mounted by One Click concerns YOU ALL.

I fully recognise that many others have their own projects that equally deserve meritorious financial attention.  But I would say this.  One Click has helped many disparate advocacy groups and people down these years by publishing their material to maximum worldwide effect and distribution.  We have provided this service completely for free and have never asked for a penny. Not one. Now we are asking, please, in the nicest possible small way.  

We fully appreciate the financial constraints under which many labour.  But surely, even if you are on the terribly limited government benefits provided for by the State with which you are forced to eke out the most painful existence due to your ill health inability to work, you too can surely afford the equivalent of the cost of a cup of coffee and a sandwich that will help One Click and their excellent solicitors put the legal case for these patients from so many ill health walks of life? 

Of course it would be great if people could/would pledge large sums for this most deserving legal case, but we need to be realists and pragmatists.  If every person who reads One Click (between 4,000 to 8,000 hits per day on the website, every day of the week from 120 countries around the world) would pledge just £10 (or whatever currency denomination equivalent) to this Legal Appeal, our legal costs would be covered in an instant.

Please do not think for one single moment that what is being done by the psychiatric lobby to patients in Britain is none of your business.  It most certainly is - morally, ethically and legally.  If the psychiatric lobby is allowed to proceed full steam ahead without legal check with these CFS/ME NICE Guidelines successfully clinicised in Britain that are granting this lobby in excess £300 million, you may absolutely rest assured that what is being done to patients in Britain will be coming down your way very soon.  An equivalent of this is already happening in some other countries.

We are asking for pledges, please, from all of you around the world - Australia, New Zealand, the United States, everywhere.  In dollars, francs, euros, pesos, pounds, rupees, shekels, rials, rubles, bahts, dinars and yuans et al, the currency denomination is of no import.  What counts is that you make your pledge to help us all and our children.  

I will personally be contacting many of you directly, shortly. I predicate that there will not be another opportunity like this so perfectly crafted to call the psychiatric lobby to account in my lifetime and as such, I will leave no stone unturned to help patients.


I would now like to turn, please, to give you a very short potted history of why this legal challenge is so important.  It is impossible to encapsulate the psychiatric lobby history of some fifty years malfeasance in this short paper and so I won't even try.  Instead, I will do my poor best to provide you with the most sincere rationale of why the issue put before you today matters so much to so many and is why it is so very important.

ME/CFS labelled patients have been appalling badly treated for many years. This goes straight to the heart of Patients' Human Rights.

We illustrate, for example, the overwhelming case of very ill children forced to exercise by the psychiatrists and told that their illness is all in their heads with feeding tubes shoved into their stomachs, lying in darkened rooms or locked away from their families in psychiatric wards.  This has been done to them simply because they have had the terrible, terrible misfortune to be labelled with ME/CFS, recognised by the World Health Organisation as a neurological illness, but denied by the psychiatrists.

Numerous families have been utterly destroyed with what has gone down, with many children forcibly removed from their homes by the State under spurious grounds to force treatment. 

We give you as but one example, the case of what was done to young Ean Procter  as recounted by his Mum that is a matter of public record on the Isle of Man and everywhere else.  

This semi-paralysed eleven year old ME/CFS labelled child was deliberately thrown into a swimming pool by the psychiatrists with no floating aids to see if he would sink or swim, to ascertain whether his paralysis was genuine or not.  This is what these psychiatrists do to children in their atrocious financial championing of 'somatoform disorders'.  Ean sank and had to be rescued from the bottom of the pool.  These people nearly killed this child in an attempt to try to prove their risible 'somatoform disorders' point. This is what the psychiatrists do to ME/CFS labelled children in Britain, whether their parents approve or not.   The cases are legion and still occurring today in one f orm or another right around the world as I write this to you now.

In 1999 the BBC took up the case for patients and broadcast a chilling and devastating exposé of the plight of ME/CFS labelled patients in the Panorama programme, Sick and Tired.  Despite much public hand wringing and angst subsequent to the programme’s broadcast, once the waves of public outrage had subsided, matters moved on much the same as before.

The damaging power of the psychiatrists that has no basis in any credible science has grown exponentially down these years to become a global epidemic.  Psychiatry is the one branch of medicine that never has to prove its case and yet is permitted to wreak havoc on the lives of those that it most unjustifiably targets.


So what has changed since the BBC broadcast the Panorama programme in 1999?  

Today in the year 2007, the National Institute for Health and Clinical Excellence (NICE) through a documented process of utterly corrupt medical and political manipulation of formal due process in the production of the CFS/ME Guidelines is proposing to squander £300 million of British taxpayer's money on these very same psychiatrists. 

If the CFS/ME NICE Guidelines are successfully clinicised, £300m of your money and mine will be used to completely and utterly legitimise psychiatric abuse of patients.

Benefits and insurance payments will continue to be refused and inappropriate and harmful treatments administered. New patients naive to the politics will be duped into believing that it is all being taken seriously and that the Guidelines mean that doctors have accepted that 'CFS/ME' is real. As with many of us, they may not find out until it is too late for them that the psychosocial treatments of Graded Exercise Therapy/Cognitive Behavioural Therapy (GET/CBT) and antidepressants were a one-way ticket to permanent disability.


If I have not managed to convince you of the crying, nay SCREAMING NEED to get behind this legal action in some small way through the use of my poor words and hard work, then I am so sorry.  I will have miserably failed patients and therefore failed you all. I will have specifically failed my child whose childhood and entire life have been absolutely ruined by the psychiatric lobby dicta that has damaged millions.

We have the opportunity to challenge the psychiatric lobby through the courts by Judicial Review. Not from a tin pot firm of back street solicitors, but from  Saunders Solicitors LLP, one of the finest in the land, so familiar with the biomedical case.

We need to bury all of our past differences.  We need the ME/CFS charities who have declared the CFS/ME NICE Guidelines as 'Unfit for Purpose' to contribute some of the money that patients have given them to support this case.  To do otherwise is completely unconscionable.

I am happy to report that since the launch of this appeal on Saturday, pledges - including those from academics and doctors - have been coming in thick and fast.  We need more. Much more. This matter is urgent. We need to obtain pledges of £20,000 in total by 5 November 2007 to bring the psychiatric lobby to account through the courts.

Because of the sensitive (and wonderful!) identities of some of the people making these pledges that are now coming in, One Click will specifically not be publishing any names. It is far more important to get the pledges in to fight this good fight than to give publicity to those good people who are making it happen. 

Here are the documents that you will need to inform your decision.

I personally will not rest until justice has been done.  Please join me and the One Click organisation in helping to make this happen.  Please place your pledge.

This is history being made. Please try and be part of it.

Thank you for listening.

Jane Bryant
The One Click Group



*The CFS/ME NICE Guidelines have been produced by a process of documented unethical political and medical manipulation of due process.
* Please help us to challenge the atrocious actions of the National Institute for Health and Clinical Excellence (NICE) and the psychiatric lobby through the courts

What It Is: Judicial Review - CFS/ME NICE Guidelines
Who Will Conduct It: Saunders Solicitors LLP
What It Will Cost: Approximately £20,000
Pledges Due In: 5 November 2007
Court Application File Date: 22 November 2007

* See NICE Guidelines - Judicial Review Legal Briefing.
* See Judicial Review - Legal Appeal
* See Legal Appeal Instructions

Email your financial pledge to One Click and Saunders Solicitors LLP.
Our legal fundraising target is eminently reasonable and entirely possible when addressed by the collective. It is that simple.

We look forward to receiving your tangible support for this legal campaign.




Preventing Misdiagnosis

Perhaps we could get this put on medical students' reading syllabus?
What's that you said doc? You can't be bothered to read 182 pages,
you'll just diagnose em all with CFS/ME?

Shame on you!



Preventing Misdiagnosis of Women: A Guide to Physical Disorders That
Have Psychiatric Symptoms (Women's Mental Health and Development)
by Elizabeth Adele Klonoff (Author), Hope Landrine (Author) "Several
of the physical disorders that present in psychiatric symptoms are
endocrinological disorders-disorders of the endocrine system ..."

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Many physical disorders suffered by women have psychiatric symptoms.
For example, hyperthyroidism can result in depression and anxiety,
and temporal lobe epilepsy can have the same symptoms as bipolar
disorder. As a result, women are in danger of being misdiagnosed as
having psychiatric problems and receiving completely inappropriate
This volume gives psychotherapists, counsellors and other
mental health professionals the foundation for identifying
physiological disorders that may be at the root of the mental health
problems presented by female clients. Illustrated with detailed cases
and supplemented with quick reference guides to symptoms and a
glossary, this much-needed book provides information that until now
has only been available in medical texts and journals. The authors
cover endocrinological and brain seizure problems, as well as
diseases such as multiple sclerosis and lupus erythematosus. They
provide an overview of the systems and organs involved, and describe
how particular malfunctions can result in serious behavioural

* * *

Many medical disorders present as psychological disturbances. Pancreatic cancer can cause visual hallucinations. Adrenal tumors will cause behavior that can seem psychotic. So you have to be very careful not to accept psychiatric diagnoses at face value. – Sheila Bastien, Ph.D.

I agree with Lara that more training needs to be given in identifying physical diseases that have symptoms that mimic psychiatric problems.  Any CFS patient who mentions to the doctor "fatigue" or "sleeping a lot" tends to be diagnosed with depression, regardless of the numerous other symptoms incompatible with a depression diagnosis. 

I will never work full-time again because of the precious time wasted giving me anti-depressants (which made me sicker) instead of treating what was really wrong with me.  By the time I finally was taken seriously and got what I needed, the damage was done.  No one ever considered that my taking the initiative to start multiple businesses was incompatible with the depressive symptom of having no initiative to start anything, nor that I kept denying suicidal thoughts or feelings of worthlessness/hopelessness, nor that I couldn't remember the last time I cried.  They heard "fatigue", thought depression, and could not be persuaded to change their minds.

I was encouraged to return to work without the doctor contemplating that if I'd been fired for not being able to do the job, then, without treatment for my neurological symptoms, I would still be unable to do the job.  Through his filter, he chose to hear that I thought I couldn't work because I was insecure about my abilities and just needed to restore my self-esteem by seeing that I really could do the work if I tried.  Not, as I kept telling him, that I was trying to do similar tasks at home, and really could NOT do the work.


A psychologist speaks on CBT for CFS

Deary, V., Chalder, T and Sharpe, M. The cognitive behavioural model of medically unexplained symptoms: A theoretical and empirical review. Clinical Psychology Review, 2007 Jul 17; [Epub ahead of print].  doi:10.1016/j.cpr.2007.07.002

The article is a narrative review of the theoretical standing and empirical evidence for the cognitive behavioural model of medically unexplained symptoms (MUS) in general and for CFS and irritable bowel syndrome (IBS) in particular. A literature search of Medline and Psychinfo from 1966 to the present day was conducted using MUS and related terms as search terms. All relevant articles were reviewed. The search was then limited in stages, by cognitive behavioural therapy (CBT), condition, treatment and type of trial.

Evidence was found for genetic, neurological, psychophysiological, immunological, personality, attentional, attributional, affective, behavioural, social and inter-personal factors in the onset and maintenance of MUS. The evidence for the contribution of individual factors, and their autopoietic interaction in MUS (as hypothesised by the cognitive behavioural model) is examined. The evidence from the treatment trials of cognitive behavioural therapy for MUS, CFS and IBS is reviewed as an experimental test of the cognitive behavioural models. We conclude that a broadly conceptualized cognitive behavioural model of MUS suggests a novel and plausible mechanism of symptom generation and has heuristic value. We offer suggestions for further research.  

Extracts: “The sine qua non of any CBT model is a vicious circle, the hypothesis that a self perpetuating interaction between different domains maintains symptoms, distress and disability.... Rygh et al. (2005) suggested that central mechanisms such as vigilance and attention, or the effects of anxiety, depression or stress, may dampen inhibition of these pathways, lowering the threshold yet further. This could lead to normally benign sensations being experienced as pain, leading in turn to further sensitisation and vigilance... Rief and Barsky (2005) acknowledged Dantzer's research but noted that whilst there is some evidence that immune changes can induce behaviour change, it is “unclear whether this causality can also be bi-directional and whether it contributes especially to the development and maintenance of somatoform symptoms in humans.” They observed that the biological findings in patients with MUS are highly varied and do not yet present a consistent and coherent picture. Whilst there is some evidence of increased autonomic arousal and of delayed recovery of the stress response, these findings vary between conditions and between different phases of the same condition. Therefore rather than anchor their explanation to a particular bodily system, Rief and Barsky (2005) proposed a more generic model in which symptoms arise through a two stage process of generation and selection. At the first stage, bodily symptoms may be generated by multiple determinants including over-arousal, chronic stressors, HPA activity, sensitisation etc. At the second stage a hypothetical filter system selects symptoms for conscious attention. This selective process will in turn have multiple determinants: health anxiety, depression, lack of distraction, uncertainty as to origin of symptom etc. These contribute to “faulty filtering” and increased symptom perception. Brown (2004) has suggested a similar model which emphasises the roles of attention, mis-attribution and mis-interpretation in the maintenance of MUS... A cognitive bias develops for symptoms, further amplifying them which serves to further sensitise “the neural loops supporting cognitive rumination… pain and illness lead to more pain and illness” (Ursin, 2005). These models are notably similar to Barsky and Borus's (1999) somatosensory amplification and Rief and Nanke's (1999) cognitive-psychobiological framework...” On the model itself: “An innate tendency to somatopsychic distress and ease of distress sensitisation, combined with childhood adversity, increase both the amount of symptoms experienced and lowers the threshold for their detection. Life events and stress lead to physiological changes which produce more symptoms and set up processes of sensitisation and selective attention. This further reduces the threshold of symptom detection. Lack of explanation or advice increases anxiety, symptoms and symptom focus. Stress cues become associated with symptoms through classical conditioning. Avoidance of symptom provocation, and symptom-led activity patterns, lead to further sensitisation through operant conditioning. The prolonged stress of the illness experience itself further activates physiological mechanisms, producing more symptoms, sensitisation, selective attention and avoidance. The individual can thereby become locked into a vicious cycle of symptom maintenance... The CBT model of CFS (see Suraway et al., 1995; Deary & Chalder, 2006) hypothesises that in vulnerable individuals, such as those who are over-active or under-stress, CFS is precipitated by life events or viruses leading to an autopoietic cycle in which physiological changes, illness beliefs, reduced and inconsistent activity, sleep disturbance, distress, medical uncertainty and lack of guidance interact to maintain symptoms. The evidence supports some of the individual dots in this picture but not yet the lines between them.... The nature of individual differences in susceptibility to MUS would also merit further attention. High neuroticism may offer an underlying common mechanism for distress sensitivity and intolerance which lowers the threshold for symptom detection (both mental and physical), and leads to increased propensity to conditioned responses, more attention to threat stimuli and more avoidant coping. The neuroticism concept captures many of the factors hypothesised to be at work in MUS. This would suggest two further lines of research. Firstly, more examination of the physiological, cognitive and behavioural markers of N might give us more insight into the processes at work in MUS. Secondly, longitudinal studies in N might give us a clearer idea of what mediates and moderates development of MUS in vulnerable individuals. The CBT model of MUS offers a previously undescribed illness mechanism maintaining a distinct group of disorders that we might call autopoietic conditions. The fundamental hypothesis underlying the model is that symptoms are maintained by a self perpetuating, multi-factorial cycle. Treatment is aimed at elaborating the unique inter-play of factors in any given patient and dismantling the autopoietic mechanism by making changes in target areas... Distress intolerance is as a key theme in the CBT model of MUS maintenance. Symptoms are perceived as aversive/threatening, which triggers a physiological response, which serves to maintain avoidance, symptom focus and symptoms. One hypothesis would be that developing the ability to tolerate symptoms whilst not letting them dictate behaviour would be a promising line of enquiry. The so called third wave of CBT, particularly Acceptance and Commitment Therapy (see Hayes, Strosahl,&Wilson, 1999), with its emphasis on distress tolerance and goal maintenance would seem well suited as a paradigm to apply to these conditions, as would the related intervention of mindfulness.”

[Ed. Note: This review relies on a reductionistic approach, i.e. the view that an illness is not a disease unless it has an identified physical cause, plus the assumption that if no such cause has  been identified in 20 years, there may not be a physical cause to be identified. To put it another way, here absence of evidence is taken as evidence of absence.

Given the definition of CFS selects a  heterogeneous population, there is unlikely to be a single cause. It is this which has led to inconsistent findings in biomedical research and the uncertainty regarding aetiology helps to feed the CBT theory.  Aside from the lack of a physical cause argument, the model also continues to rely on  the assumption of the ‘universal response’, which is invariably unhelpful (e.g. avoidance behaviours), coupled with  maladaptive personality traits (e.g. perfectionism, neuroticism). Thus there is no recognition of the research indicating the use of appropriate, adaptive coping strategies (e.g. Saltzstein et al 1998), let alone the fact that many patients engage in pro-active coping such as pacing (original version). Pro-active coping appears to be linked with positive outcomes in the same way that the strategies described in the paper are often associated with negative ones (Aspinwall and Taylor 1997). Furthermore, there is no recognition of individual differences in the appraisal of threats or traits such as optimism and resilience, and the model cannot explain the outbreaks (Raised N scores in the chronic phase after the Royal Free outbreak can be explained in terms of the somatic items common to both neuroticism and the illness itself. Research has shown that N scores are no different to those found in MS). 

Another  factor which makes a reappearance is the  notion of misattribution, which  assumes that the evidence of  ongoing pathology documented in ME and CFS is unreliable (e.g. Innes 1970, Lane et al 2003, Natelson et al 2005, Chia and Chia 2007), in contrast to the findings from personality studies (e.g. where only some met the CDC criteria, cf. White and Schweitzer 2000). There is also a notable reliance on generalisations, as before. The fact that one study found that people with IBS engaged in ‘all or nothing’ coping (p. 7) does not mean that this strategy is used in the same way by other patient groups, and the authors' reference to a “clinically prevalent belief” that this is the case in relation to CFS  is anecdotal. That is the kind of evidence they reject when offered by those outside the CBT school.

This more  sophisticated model still does not explain some of the neurological signs documented in ME, or the abnormalities found in other subsets. Raised levels of cytokines are linked to low cortisol and ‘burn-out’, but not to the evidence of ongoing infection (cf. Lane et al 2003, Chia and Chia 2007). However, the inconsistent findings relating to CFS is a problem which we must acknowledge, hence I will  focus in more detail on the strength of the psychological arguments. 

The carefully linked associations between different components of the model are elegant and seemingly persuasive unless the reader is familiar with the literature and is aware, for instance, that some references are speculative articles (e.g. Barsky and Borus), or reviews (Henningsen et al 2003) rather than reports of original research. In my view, the paper trivialises some of the symptoms, and given the paucity of evidence, overstates the significance of attention and attributions. Research suggests that most patients appear to have realistic attributions, and members of the CBT school themselves have found psycho-social attributions in their own studies. When reading this, I wondered if they assume these to be as faulty as somatic attritutions?

One question which was not answered here and in the first version is how a virus might trigger the illness, while attention, beliefs and low cortisol suddenly cause the exact same symptoms following the acute phase. This assumption that patients cannot tell when the disease has passed and psychological factors take over requires evidence of a personality which does not recognise differences in internal cues.

The model also fails to explain the links with exertion 24 hours to five days following activity, as indicated using objective measures, i.e. the evidence shows that the muscles are weak, and the symptoms are not solely a reflection of an (unfounded) fear of  exacerbations, cf Paul et al 1999. moreover, fatigue after five days is difficult to attribute to deconditioning.

This model recognises the complexity of CFS to a far greater degree than the first version but I remain unconvnced. It appears to have the subtext: patients are not to be believed, they misunderstand and exaggerate. This brings us back to the explanations of psychiatrists such as McEvedy and Beard and Barsky and Borus. They all clearly had feeble females in mind: poorly educated, gullible and without sense.  Though the authors cite a person questioning the direction of causality, the rest of the paper leaves readers with the clear message that all the associations are invariably one way.  Thus the psychological mechanisms cause the immunological and HPA abnormalities, the anxiety and depression  reflect the “distress proneness”,  and so on.  References to support the general use of avoidance coping are missing, possibly because avoidance behaviour in CFS tends to be limited cf Sisto et al 1998. The vicious circle model predicts that the symptoms would get progressively worse but in most patients with CFS, they do not. I am also left with the question which element of the model explains the improvements noted in a significant proportion of patients over time? Do people suddenly become less perfectionist? Do they become less sensitive to stress? The natural course of the condition is not discussed, and therefore requires no explanation. This is part of the modus operandi of the CBT school, (they never discuss findings such as McGarry et al 1994 and Paul et al 1999 for the same reason), and the new, more complex model, merely continues where the old, disproven one, left off. 

Other means of diverting attention and avoiding difficult questions involves recategorising findings. The Wallman et al paper on pacing is classed as a study of  GET even though the protocol permitted patients to stop the activity if they felt unwell, which is contrary to the principle behind GET, where patients are encouraged to continue and tolerate symptoms, at least for a few days. This is in line with the ‘no pain, no gain’ philosophy underlying  this intervention. However, I welcome the recognition that the treatment effects associated with CBT are “modest at best” (p.9) and the acknowledgement that links between the various components are far from solid. But the main impression of this paper is one of  missing information.   The careful selection of patients, e.g. using broad criteria, and the lack of measures of immune function etc are not mentioned as  factors which may have confounded results. The bias and selectivity reflect a lack of respect for the scientific process, e.g. appraising findings which do not support the model, discussing the evidence for alternative views and most of all, an accurate discussion of the expereinces and views of those who suffer from the conditions. These criticisms do not  preclude the possibility that there is a subset of patients within the CFS population whose symptoms are perpetuated largely by fear etc, and I accept that some patients may believe the misinformation on the internet and subsequently develop maladaptive beliefs, adding to the stress and undermining the HPA axis etc  as a result.

I wish  to encourage a greater tolerance of alternative views and more objectivity. I believe that these are essential to help us understand the aetiology of CFS, and to improve the standard of patient care. People require a range of opinions, hence this post. Please note that the above criticisms of specific arguments should not be taken as reflecting a personal preference for any specific theory.]

Ellen M. Goudsmit CPsychol CSci AFBPsS

Sunday, October 14, 2007

One Click Legal Action

Please forward as far and wide as possible, help for this initiative
greatly needed.

Many thanks



Legal Appeal
Judicial Review
CFS/ME Guidelines

The One Click Group launches today the Legal Fighting Fund
to challenge the CFS/ME NICE Guidelines in Britain
by Judicial Review

What It Is: Judicial Review - CFS/ME NICE Guidelines
Who Will Conduct It: Saunders Solicitors LLP
What It Will Cost: Approximately £20,000
Funds Due In: 5 November 2007
Court Application File Date: 22 November 2007

Action Summary
1. Read NICE Guidelines - Judicial Review Action
2. Read the structure of the legal campaign below and the
Appeal Instructions
3. Email One Click and Saunders Solicitors LLP with your
financial pledge.

If every person who reads this document will pledge just
£10 (or Euros or Dollars) or more each, we will instantly
have the legal funds that we need to challenge the appalling
CFS/ME NICE Guidelines by Judicial Review. Our legal
fundraising target is eminently reasonable and entirely
possible when addressed by the collective. It is that simple.
An email and a pledge. With One Click you can help make a
difference that will have beneficial impact on the lives
of millions of patients, worldwide.

What is being done to ME/CFS labelled patients by the
psychiatric lobby in Britain will have a domino effect on
you all, worldwide. Lucrative and highly unethical
psychiatric fraudulence (http://tinyurl.com/55e3f) backed
inevitably by the pharmaceutical industry and masquerading
as science has reached global, epidemic proportions.


The One Click Health Advocacy Pressure Group calls for
these CFS/ME NICE Guidelines (http://tinyurl.com/ysxa8v)
to be withdrawn.

Because of the unethical political and medical manipulation
performed by the National Institute for Health and Clinical
Excellence (NICE) and its associates during the development
and production of the CFS/ME Guidelines, we have a very
good case to challenge NICE in the courts by Judicial Review.

Despite repeated pronouncementsby many ME/CFS charities in
Britain on these Guidelines as 'unfit for purpose', we have
seen absolutely no evidence of legal activity from the
charities to date. This task therefore appears to fall to
the patients whose only vested interests are the goal of
good health, fair treatment and proper representation.


The One Click Group has been a Registered Stakeholder on
the development of the CFS/ME NICE Guidelines for the last
two years. We have provided reams of biomedical documentation
to NICE. Our work has been extensive for a very long time. We
refer you to the dedicated NICE Section
(http://tinyurl.com/yjq3hu) of this website, together with
the News Archives (http://tinyurl.com/2mqw8w).


On 10 October 2007, One Click submitted the NICE
Guidelines – Judicial Review Action legal briefing
document (http://tinyurl.com/357o37) to our lawyers,
Saunders Solicitors LLP.

Saunders Solicitors LLP are most familiar with the
ME/CFS biomedical by dint of constant association. This
firm has provided pro bono legal advice to One Click for
many years. For this, we all thank them sincerely.

There always comes a time in legal work however, when pro
bono will no longer suffice and colours must be nailed to
the financial mast; barristers must be consulted and
Applications lodged with the court.

"All of these propositions produced by One Click are capable
of taking us to a Wednesbury unreasonable legal position
with NICE," said James Saunders, Senior Partner of Saunders
Solicitors LLP. "This is a serious issue that needs to be
correctly evaluated by lawyers before legal proceedings
can commence."

The cold application of Wednesbury unreasonable principles
to the One Click propositions which can be sifted out MUST
be done by the lawyers in order to move forward.

There is such a massive orchard of processes and decisions
that NICE has taken over these CFS/ME Guidelines that are
Wednesbury unreasonable, it is hard to cherry pick the most
suitable as they all compete. One is that spoilt for choice.

How You Can Help

1. Read the One Click NICE Guidelines - Judicial Review
Action legal briefing (http://tinyurl.com/357o37) and
the Appeal Instructions (http://tinyurl.com/39cgjm)

2. Please make an offer of financial commitment as a
person or group to legally challenge these Guidelines.

We should try to aim to get in a total of £20,000 by
5 November 2007 in order to fund the lawyers to do their
work to get ready to submit court Applications to meet
the deadline of 22 November 2007.

** This call is urgent. Please send commitment words. **
We need the promise of funds to proceed. These legal date
constraints are not of our choosing and have been forced
upon us by NICE and the law that restricts legal response
timelines. Despite their published sentiments, the charities
appear to have failed to act, so perforce we must.

3. If Saunders Solicitors LLP and One Click obtain the
required financial promises from you all needed to prosecute
this case, we will proceed as indicated. If we fail to
reach this approximate financial target, then obviously we
will have to stand down from legal action against NICE. You
will not be called upon to honour your pledge unless we
reach the critical mass of the targeted £20,000 needed to
take NICE to court.

Please write to One Click and Saunders Solicitors LLP to
express your financial support and the amount that you
are prepared to give to take NICE to court.

Here is an example of the template email for you to copy, paste and
despatch, if you so choose, including the appropriate email addresses
that you will need.


Template Email Example

To: mail@theoneclickgroup.co.uk
Cc: info@saunders.co.uk
Subject: Judicial Review - CFS/ME NICE Guidelines

I/We (insert name....) wish to make an offer of financial
commitment of £... (insert amount) to assist in funding
Judicial Review of the CFS/ME NICE Guidelines.

(Insert personal comment if you so wish)

Yours sincerely

(Name/Group Name Appended)


"Having watched my young son have his life entirely
wrecked by the inappropriately applied ME/CFS label since
the age of ten and for the last six years, I see no other
option but legal recourse," said One Click Director Jane
Bryant. "We need to put court proceedings in place to
represent the biomedical case for ME/CFS and have this
case worked up to best legal effect by lawyers very familiar
with this concept. After what my son and so many others
have been through, I for one would never forgive myself
for not attempting to explore this legal challenge. I
predicate that there will not be another opportunity like
this so perfectly crafted to call the UK psychiatric lobby
to account in my lifetime."

We are aware that there has been disruption to legal
campaigns caused by a small minority in the past. There
are many, some most surprising, vested interests at play
who will naturally attempt to kill this campaign by whatever
means they can. We should remain vigilant to ensure that
this is kept to a minimum.

One Click Founder, Jane Bryant, will be putting out a
personal statement on the One Click Yahoo Members Group
(http://tinyurl.com/7slom)on this issue anon.

Whether this case is successfully promulgated using
the best force of the law or not is entirely in your hands.
The decision is yours.

We all need to coalesce and help each other and our children.
Legally unchallenged, a version of the CFS/ME NICE Guidelines
that concentrates exclusively on the psychiatric will be
coming down your way extremely soon.

Please help us and our lawyers to help you.

The One Click Group


* The CFS/ME NICE Guidelines have been produced by a
process of documented unethical political and medical
manipulation of due process.
* Please help us to challenge the atrocious actions of
the National Institute for Health and Clinical Excellence (
NICE) and the psychiatriclobby through the courts

What It Is: Judicial Review - CFS/ME NICE Guidelines
Who Will Conduct It: Saunders Solicitors LLP
What It Will Cost: Approximately £20,000
Funds Due In: 5 November 2007
Court Application File Date: 22 November 2007

* See NICE Guidelines - Judicial Review Action legal briefing
* See Judicial Review - Legal Appeal
* See Legal Appeal Instructions

Email your financial pledge to One Click and Saunders
Solicitors LLP.Our legal fundraising target is eminently
reasonable and entirely possible when addressed by the
collective. It is that simple.

We look forward to receiving your support of this legal


This information is available on THE ONE CLICK GROUP website