Saturday, May 31, 2008

Learning Firsthand About Chronic Fatigue Syndrome or ME ..

Published: May 30, 2008 in The New York Times.

Leonard Jason is a professor of psychology at DePaul University in Chicago and the director of the university’s Center for Community Research. He is on the Chronic Fatigue Syndrome Advisory Committee to the federal Department of Health and Human Services and is a board member of the International Association for CFS/ME, an advocacy group.

Q: How much would you associate the skepticism with the name “chronic fatigue syndrome,” which is used in the United States, instead of names like “myalgic encephalomyelitis” or “myalgic encephalopathy,” which are more common in other countries?

A: The name is unfortunate. It’s a terrible name, because fatigue is the focus and that is differently experienced by people who are healthy than by people who have this illness. I do think if we called bronchitis or emphysema “chronic cough syndrome,” you’d probably have very little respect for those people, but ………….."

Myalgic encephalopathy is just another name from the psycho ramblers to GET ME reclassified by the WHO as that name doesn't exist and so hasn't been classified as yet, so if you ask me what th best name for ME should be, well simple, there are two choices,

1. either keep the name ME as in meaning Myalgic Encephalomyelitis or
2. as a tribute to that great doc call it Ramsay's disease and all the silly psycho ramblers can go back to where they belong, ie locked up in a mental institution.....

or isn't that where they work and what psychiatry is all about, seeing people with mental health problems instead of seeing neuro diseases, I would say that professor CBT wanted to be a neurologist but failed all his applications so he is simply using a good paying back door, wouldn't you ?????

And if you want to know how good CBT for ME is, just have a look at the following cartoon, says it all......

Friday, May 30, 2008

Professor CBT and false beliefs about ME and the internet ...

On a more positive front, there is now another great Blogger who is enduring CBT and writing about it. When it works it was the CBT, when he isn't cured it is his fault as we all know to well, which is the beauty of CBT-ism.

Yet the BIG CBT man himself has recently said that CBT doesn't work, it only helps with coping with fears and anxiety. So at 100 pounds a session, and we need 12-16 before they can blame us for not wanting to GET better, we could do a lot of research, help all sorts of people etc, but no, professor CBT is so powerful with his BIG FAT LOBBY that he still GETs his millions for utter uselessness.

Good job. Just like the RCGP who apparently have reclassified ME or is it only CFS as a PSYCHO ILLNESS. I must say that I am amazed that the BLOKES at the RCGP, the Royal College of GP's can't even read or use the internet and are just like the RSM in that they want to become a psycho esthablishment and very desperately it seems.........

WHO, never heard off at the RCGP, mitochondrial abnormalities, huh?

Can't be a blood donor with ME, HUH?

Genetics abnormalities, HUH?

Some patients need TUBE FEEDING, HUH?

But remember, even NICE said, CBT and GET are VOLUNTARY and if you say NO it can't effect your treatment says NICE, so no more sectioning for ME patients to GET GET and CBT and I am glad to say that ZOE is now off her sectioning.

But how many more PWME are locked up in psycho wards or are being sectioned right now because the idiots that call themselves docs haven't got a clue about ME and can't even read a small and very usefull book by Dr Ramsay, only a FIVER guys.....

More about the RCGP another time when there is more SAP in my dual core processors, might contact INTEL, as far as I know they know more about ME than the delusional psycho brigade will ever do as they still keep on studying Chronic Fatigue but then they call it CFS or ME whenever that seems a better name to continue their PORKIE TELLING BUSINESS, great doctoring by the way guys, now where was that in the HIPPOCRATIC OATH????????

Monday, May 26, 2008

Margaret Williams: WESSELY does it again and again and again and....

Faculties Failure?

Margaret Williams

25th May 2008

There can be few in the international ME/CFS
community, either researchers or sufferers, who are
not profoundly dismayed at yet another article
co-authored by Professor Simon Wessely that fails to
distinguish between patients with chronic fatigue
and those with chronic fatigue syndrome.

His article Physical or Psychological a comparative
study of causal attribution for chronic fatigue in
Brazilian and British primary care patients (Acta
Psychiatr Scand May 2008:
doi:10.111/j.1600-0447.2008.01200.x) fails to
distinguish between chronic fatigue and chronic
fatigue syndrome, the latter also being referred to as
myalgic encephalomyelitis.

For peer-reviewers of a highly-rated journal such as
Acta Psychiatrica Scandinavica (which has an impact
factor of 3.857, this being a high score, since 90% of
journals score less than 1 on impact rating) to have
allowed such blatant misrepresentation to have
escaped censure is alarming.

It is a matter of record that when serious errors and
misrepresentations in his published articles
when challenged, even Wessely himself cannot
rationally condone) have been pointed out to him
and to Editors, Wessely blames his peer-reviewers.

One instance of this occurred in 1997 in relation to
his article in the Quarterly Journal of Medicine (The
prognosis of chronic fatigue and chronic fatigue
syndrome: a systematic review. Joyce J, Hotopf M,
Wessely S. Q J Med 1997:90:223-233), the many
flaws of which were exposed by Dr Terry Hedrick
research methodologist) in a bullet-proof analysis
that was published in Q J Med 1997:90:723-725.

To quote Hedrick: Patients beliefs in organic bases for
their illnesses may be more accurate than anything
else we have to offer at this time. Not only did the
Joyce et al article fail to summarize the psychiatric
literature accurately, it omitted discussion of the
many avenues now being explored on the organic
underpinnings of (ME)CFS.

This is not an isolated example of Wessely blaming
his peer-reviewers.

There have been others, for example, when UK medical statistician Professor
Martin Bland
from St Georges Hospital Medical
School, London, pointed out significant statistical
errors in a paper by Wessely and Trudie Chalder,

saying that Wesselys findings were clearly
impossible, Wessely absolved himself from any

Bland was robust: Potentially incorrect conclusions,
based on faulty analysis, should not be allowed to
remain in the literature to be cited uncritically by
others (Fatigue and psychological distress. BMJ: 19th
February 2000:320:515-516). Wessely was compelled
to acknowledge on published record that his figures
were incorrect: We have been attacked by gremlins.
We find it hard to believe that the usually infallible
statistical reviewers at the BMJ could have
overlooked this and wonder, totally ungallantly, if we
can transfer the blame to the production side.

Will Wessely once again try to blame his
peer-reviewers for this latest confusion and absolve
himself from any blame? By what mental mechanism
does he continue to dissociate himself from the fact
that his personal belief that ME/CFS is a behavioural
disorder is unsupported by hard evidence? Is he
unmoved by the body of irrefutable evidence that has
shown him to be wrong? That body of evidence is not
going to go away. Why does he continue to deny it?

How often must it be pointed out that it was in 1990
that the American Medical Association made it plain
that chronic fatigue and chronic fatigue syndrome are
not the same? The AMA statement said: A news
release in the July 4 packet confused chronic fatigue
with chronic fatigue syndrome; the two are not the
same. We regret the error and any confusion it may
have caused.

And yet --- eighteen years later --- here we have
Wessely and his co-authors still using the terms
chronic fatigue and chronic fatigue syndrome and
myalgic encephalomyelitis synonymously.

Does this not amount to scientific misconduct?

The title and the abstract of his latest paper refer to
chronic fatigue but the text refers to chronic fatigue
syndrome and ME.

Given the fact that chronic fatigue is not synonymous
with ME/CFS, the authors cannot possibly be talking
about patients with ME/CFS, yet they claim to be
doing so: Chronic fatigue syndrome (CFS),
sometimes also known as myalgic encephalomyelitis

Once again, this is in rank defiance of the World
Health Organisations International Classification of
Diseases (ICD-10, 1992), which classifies fatigue
quite separately from ME/CFS; moreover, the WHO
has provided written clarification that it is not
permitted for the same disorder to be classified to
more than one rubric. Fatigue is classified as a
mental disorder whilst ME/CFS is classified as a
neurological disorder.

Why is Wessely continually permitted to defy such
international taxonomic principles?

Unsurprisingly, this latest paper is replete with

In it, Wessely states emphatically: British primary
care patients with unexplained chronic fatigue were
more likely to attribute their fatigue to physical
causes than their Brazilian counterparts.

Wessely acknowledges that: The study participants
were not randomly selected
representative samples
from the healthcare seeking population yet his
conclusion is categoric: Causal attribution influences
symptom experience, help-seeking behaviour and
prognosis in chronic fatigue syndrome.

Wessely states: Less explored is a possible variation
in causal attribution between sociocultural settings
and to what extent physical attribution consistently
associated with a poor prognosis of CFS is enhanced
by sociocultural variables more frequently observed
in Western affluent countries such as the UK. These
include the sociopolitical debate about the
nosological status of CFS in general and for disability
benefits in particular.

Somewhat unexpectedly, Wessely concedes that CFS
is officially endorsed as a medical condition in the
UK, citing A report of the CFS/ME working group:
report to the Chief Medical Officer of an independent
working group. Hutchinson A. cited 2007 September
23 (i.e. the Report to the CMO). This is notable,
given that the original report of 11th January 2002
specifically omitted to accept the WHO classification
of ME/CFS as a neurological disorder.

If Wessely concedes that CFS is officially endorsed
as a medical condition in the UK, why does he refer
to it as unexplained chronic fatigue (UCF), which is a
WHO classified mental disorder?

It is a straight-forward enough concept, so once
again it has to be asked what is it about this
concept that Wessely seems so continually unable
or unwilling to understand?

In this latest paper, patients in the study with
unexplained chronic fatigue were identified using the
Chalder Fatigue Questionnaire, which is said to
identify substantial chronic fatigue lasting six
months or more. How this matches the criteria for
ME/CFS such as the 2003 Canadian definition by
Carruthers et al is not explained. The authors state:

The questionnaires were read out to illiterate (Brazillian) participants. Those who fulfilled criteria
for CFS were then asked to answer questions on
causal attribution, duration of fatigue, and the
Centre for Disease Control and Prevention (CDC)
1994 case definition of CFS.

Furthermore, the authors state that they relied upon
an estimated prevalence of chronic fatigue and on an
assumed prevalence of UCF.

Despite a study cohort that seems to be a
conglomeration of ill-defined participants, Wessely
et al state: More widespread awareness of CFS/ME in
the UK may lead to a greater likelihood of British
patients viewing their fatigue via a biomedical
perspective than their counterparts in Brazil. In the
UK, most media and self-help material provided by
patient organisations are more likely to promote
physical rather than psychological explanations (and)
the health care system, which labels fatigue as a
medical condition, may further reinforce this

No reference is provided to support the assertion
that the UK health care system labels fatigue as a
medical condition.

The authors state: Social support provided in a way
which fosters dependency can help maintain chronic
fatigue (and) there is an association between
secondary gain and health outcomes (in) functional
somatic syndromes.

Wessely et al supply no references to support their
claim, and seem to ignore the fact that both the
Canadian and Australian guidelines reject such a

Despite Wesselys acknowledgement that there was a
high non-response rate in the UK (Approximately
30% of the eligible patients in the UK did not
complete phase 2 in comparison with only 6% in
Brazil), the conclusion is that:

The higher availability of sick leave / sickness benefit because of CFS in the
UK may both contribute to and reflect the greater
legitimsiation of chronic fatigue as a medical
disorder. The findings of this study lend some
support to the evidence on the important role of
sociocultural factors in shaping illness attribution
and perception around chronic fatigue and chronic
fatigue syndrome.

It cannot be emphasised enough that unexplained
chronic fatigue is not the same as ME/CFS.

At the Second World Congress on CFS and related
disorders held in September 1999 in Brussels, Dr
Daniel Peterson from the US said that ten years ago
(i.e. in 1989), he believed that (ME)CFS would be
resolved by science, but that he had now changed
his mind and believed that it could only be resolved
by politics.

It is politicians whom Wessely advises on CFS/ME
and it is politicians who implement his advice,
without seeming either to be aware of or to care
about the enormous body of scientific evidence
demonstrating that Wessely is simply wrong to lump
chronic fatigue with ME/CFS as a single entity.

Can it be right that politicians should now control the
science of medicine?

Wessely seems to think so. His latest paper seems
to be saying that if Social Security benefits are
stopped, patients will stop having ME/CFS.

This contradicts the NICE Guideline on CFS/ME that
was published in August 2007, which clearly said
that it was the doctors job to support CFS/ME
patients in obtaining benefits.

It seems that Wessely disagrees.

No, it seems that he just wants his name in a paper again and again, and if you keep on telling the same story people will start to believe it and see him as the big know it all, delusional psychiatry at its best.

Also called repetitive strain psychiatry ...

Sunday, May 25, 2008

Protesting at the RSM and Joan's ME story...


Up until 1997 I had been a fit, active person. I enjoyed long distance cycling, hill walking, and skiing. I enjoyed a very active social life and a challenging and busy job. I got a buzz out of living a full life.

So, where did it all go wrong? In 1997, I had been given several injections before I went abroad to work - polio, typhoid, hepatitis and I took antimalaria tablets for six months. I was really tired and drained all the time and my eyes kept 'wobbling' or that is what it felt like anyway!

I put this all down to the antimalaria tablets and working long hours in heat and humidity; it would make anyone tired. I also had a problem with diarrhoea and eventually it got so bad I took myself to the nearest city for testing. I was diagnosed with a bacterial and fungal infection of the guts.

I took the pills and that was that. After my return to the UK I never fully recovered and over the following years I suffered periodic diarrhoea, muscle tenderness & twitching, cognitive impairment and mental fatigue. I had many NHS tests done. Nothing was ever found. I was also getting some other symptoms. I developed a horrid fear of flying, which was very frightening. I had previously found flying to be an adventure and exciting. Now, I was a wreck when we hit turbulence.

I carried on working. I found myself in the position of being able to work, provided I took no exercise at all. I worked and slept, worked and slept, for a year, before I took a turn for the worse and in 1999, I was diagnosed with depression, by my GP. With the benefit of 20:20 hindsight it was clear that ......

I just received a great comment a few days ago when my server and modem were not on permanent holiday, about my BLOG about professor CBT and his project to GET piles reclassified as a psycho illness.

“CBT for piles ...explains their confusion and delusions about m.e. though - must have been talking to the wrong end of the patient for years - obviously don't know which way is up - a wee visit to the optician might help.”

And that is why it is so great that the BBC after their YOU AND YOURS programm have now launched their own version of CBT, the CeeBeebiesTherapy for psychiatrists who are in diar need of help as they don’t know which way is up, nor do they know that CBT-ism for ME is not only a waste of money, it is also deceit of the very first order and a criminal offence.

It is a bit like telling that a Trabant goes faster than a Lamborghini, or that a lion is less dangerous than a butterfly but with CBT you can sort that problem....

Now the good thing about the CeeBeebiesTherapy is that it will be brought to you by the Teletubbies, don’t ask me if it will be professor CBT himself or his Top Dogina who wil start talking the way the Teletubbies do.

The BBC has also announced that it will host a real research project in the style of the FINE PACE trial, so a project with the outcome decided before the trial has started. A bit like if I would kick a ball and state that I will be better at it than Cristiano Ronaldo or that I cab drive faster than Lewis Hamilton.

And even after 12 to 16 sessions of Harry Potter therapy also called CBT, I will not beat Lewis even if he would drive a P40 or a P60 and I would drive his McLaren fo the simple reason that I would stall the bloody thing every time I would try to drive away, and if you don’t believe, me ask that little Hammond fellow from TOP GEAR that never crashes thanks to his CeeBeebiesTherapy, how many times it took him to finally drive away in the Renault F1 car.

I think it took him all day, 93,3 attempts to drive 48 inches or something to that extent, and when the clutch was almost turned into a BBQ one that is GET’ed he got going.

And that little fellow is still puzzled how he did it and has no answer to that question, a bit like professor CBT if you ask him what ME is after 20 odd years of so called research of porkie telling about the disease…..
And if you want to see some great photo's from the protest, just download them here and DO NOT FORGET TO LOOK at page 14 !!!!!!!!!!!!

Tuesday, May 20, 2008

Historic breakthrough for ME at the RSM, yes reallly part 2

Yesterday I used professor White's presentation at the RSM, or is it BRM, to show that he was doing a few things. For one obviously trying to reclassify ME into a psycho rotting disease, no offence but I have long ago discovered that I would have been much better off with a depression or a burn out, than with this so called senility as the others we can actually treat. Makes a difference you know...

Now you won't hear me talk about piles but I had a great laugh about an email that made my day as apparently professor's CBT next project is to turn his attention to piles and declare them a psycho illness as well.....

Cured by talking to someone's lovely behind.... interesting business that delusional psychiatry and CBT-ism ....

If you look at the following from the preface to Dr Ramsay's book, you will note that this muscle problem is ONLY in the Canadian and South Australian guidelines and criteria, not in any of the others....

The other thing is, we can't call ME ME anymore as not everybody has a facial paralysis according to one of the leaders of the denial brigade, well just look at the following, yes, it was on page 3, maybe that is why page 3 is so famous, of Dr Ramsay's book. And if less than 20% had it, it meant that more than 80% didn't professor....

Just a minute detail............

But at least we now know that even the psycho ramblers acknowledge that ME is a neurological illness, we are not allowed to diagnose it anymore otherwise the whole world will know what an utter waste of time, money and resources CBT and GET are, not to mention how dangerous GET in ME is.

So time for suiing a CBT-ist over GET wouldn't you think????

Oh, and one more minute detail of cheering me up, nothing to do with ME but all to do with me, so thanks for that and all the other good wishes of a speedy recovery:

Monday, May 19, 2008

Historic breakthrough for ME at the RSM, yes really ...

Even for people who have seen the following account of professor Peter White’s presentation at the RSM it is worthwhile to read it again because he has said some amazing things which you don’t notice straight away.

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
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. (Isn't it the other way around with CFS Mr Professor ????)

[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’.
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 utterly useless unless you suffer from anxiety or fears……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.”
So obviously he wants us to forget that ME is a neurological illness when he makes up his psycho differential diagnosis. But here you have to stop and start to think as a doctor. You see, in medical school you learn to diagnose something straight away if you know what it is or otherwise if you do not know what somethng is, you come up with a differential diagnosis, so basically you come up with a list of what it could be. If someone comes to the ER or A+E with acute abdo pain, you think as a doc that it could be appendicitis, a ruptured ovarian cyst, an ectopic pregnancy etc. But that also means, you don’t know what it is. So with that in mind, have a look at the presentation again.

What conclusion would a sensible doctor with no prior knowledge of ME/CFS come away with? Exactly, the professor doesn’t know what ME is as he came up with 5 different diagnosis:
F48: neurasthenia
F45.3 somatoform autonomic dysfunction
F45.9 somatoform disorder, unspecified
R53 malaise and fatigue
R54 senile asthenia

The funny thing is, CFS or ME isn’t even in that list, but that is just a minute detail. A bit like buying a car and getting one without brakes, a steeringwheel, tyres and an engine, but what do the docs know about ME who go to a psycho conference at the RSM.

The other thing is, after hysteria, wysteria, lysteria and more great names we are now a bunch of senile people as well….

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: the professor thinks CFS equals Alzheimer’s…….

And what did he say about NICE:” 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.”

Well actually, if he would have read them it only requires fatigue and a sore throat or a headache to diagnose CFS or ME. So he can’t even count ….And as well all know these people have a problem but it is very unlikely that it is ME unless it is in the very very very early stages.

The other thing is, if you would take your kids to the zoo and they ask what a bear or a lion is you can’t just answer, oh that is just an animal, they want you to be specific and if you ask them when they have walked around the zoo to describe a lion you don’t want them to say it is just an animal, they need to be able to a lot more specific.

If they however are on the way to CBT-hood and eternal porkie telling business, they will just call it an animal and then they have re-invented the Oxford criteria so loved by the professor and other CBT fanaticos.

If however your kids use the thinking part of their brain as they have learned in school they will come up with a definition for a lion and many characteristics of that animal otherwise you might come home with a fruitfly if you start to use the criteria …the same applies to the Canadian criteria and ME, but the professor wants to do all his so called research on ME on patients who don’t have it…. As that is the basis of delusional psychiatry…

And that is why he can say that GET is safe, because if he had tried it on just one patient who really had ME he would have immediately known that GET is a sure way of crippling a patient and getting sued as a doctor, unless you are a psychiatrists and you can threaten people with sectioning them…

It is interesting when he says that CFS is a very diverse illness, yet you only need one specific treatment. It is a bit like saying your zoo is full of a diversity of animals but we will feed them all the same food. So we give a big lump of meat to the lions, the pregnant snails, the gold fish and to the penguins and obviously to the fruitflies and new born partridges as well.

If I would propose that to the director of the zoo he wouldn’t stop laughing for a decade yet if you proclaim the same utter nonsense to a bunch of docs and psycho ramblers everybody nods and continues to sleep to get their certificate of the so called continued medical education. No difficult questions are asked, as that would not only spoil the day but it would also risk not getting the valuable certifacte which you need to show that you have been doing courses etc as a doc.

He also doesn’t want to use the word ME as than people think they have a serious problem, which we as patients know anyway…..

So he proposes to use something that sounds more like a runny nose like Yuppie flu and in medical terms that is chronic fatigue. So from my bed I have mailed the deans of all the colleges in the UK and other countries to say that from now on alzheimer’s and cancer won’t be used anymore. These words spell danger so we will use something else instead. Cancer will be replaced by a lumpuous problem and Alzheimer’s by chronic forgetfullness. Both words will make a definite impact on the quality of life and the prognosis. Alzheimer’s won’t progress anymore and all cancers will be cured. So throw away chemo therapy and other treatments because from now on the NHS will only use CBT for all diseases. It is that simple.
The other reason why he wants to use the word CF or CFS and bin ME is that he can then reclassify ME as they are hard at work to do just that, but the NICE thing about CFS in psycho minds is that you can blame us. So if we can’t walk it is our fault, if GET makes thing a lot worse we haven’t tried hard enough and you call it deconditioning, just like they did with MS when that was still called hysteria. Furthermore if someone can’t swallow and you have an idiot as a GP and you are seen by a psycho rambler he will section you and lock you up on a secure ward for God knows how long. If you don’t believe ME, just ask Sophia Mirza’s mother or Ean Proctor’s mum. Yes I know, I am not allowed by the CBT magic Kingdom people to mention these patients who had severe ME as what happened to them by the medical profession should be dealt with by the GMC and docs should be struck off. It is that simple. And that would have happened if we were talking about ME but as it was just CFS it was the fault of Ean and Sophia in delusional psycho minds that they could not walk, talk etc.and so no psycho rambler has or had to stand in front of the GMC and ….
It is the same with that young boy who after ten years of ME took his own life at the age of twenty. Psycho ramblers will say, we told you CFS is a mental problem, yet if you have MS, ALS and many other horrible illnesses and you decide at some point enough is enough people will nod in understanding. And the same would happen if the diagnosis would be ME and people realise what a debilatating illness it is, but thanks to CBT-ism it is nothing more than a runny nose in delusional minds, supported by the RSM, the MRC, politicians etc.

I am also really in love with the following sentence:
‘The reality is that mind and body cannot be divided and illnesses such as CFS/ME involve “both”, like most chronic diseases.”

You see, we don’t treat diabetes with insulin, for Celiac disease we have stopped the special life saving gluten free diet, people with for example rheumatoid arthirtis or Crohn’s disease will from now on stop their medication and so will many other people with a chronic disease because body and mind are one so if we treat the mind we treat the disease. And that is why CBT is so fabtastic……

But the historic breakthrough is hidden deep down in his lecture and you easily miss it so just read the following again:
“ME implied an incurable organic neurological illness that was originally defined on the basis of symptoms and signs found in outbreaks/epidemics.”

And then think Dr Beard and Dr McEvedy, the psychiatrists that did not examine or interview a single patient from the Royal Free outbreak and only used selected case notes to say that the outbreak had been a case of mass hysteria and who were the cause of silly CBT-ism and the root of the name change from ME to CFS, etc.

And now suddenly, this super CBT fanatic comes clean and tells us that that outbreak was in fact a neurological one. Yes, I almost fell out of my bed, I could almost walk again and shed my malingering and my mass hysteria suddenly disappeared as if tomorrow never dies.

And that is the real reason why we are not allowed to use the name ME, because even one of the most influential CBT psychiatrists has now acknowledged the fact that ME is a neurological illness and that is also why he came up with FIVE different psycho classifications to make sure that no one would notice this important fact.

He tries to strenghten his case by saying that you don’t see facial paralyses in individual cases, meaning not everybody has it but if you read Dr Ramsay’s book you will notice that this was a symptom that some patients had but most didn’t so it was not a defining symptom ie a symptom that was required to diagnose ME.

For that there were others and (one of) the most important one/ones, was the abnormal delay in recovering from very simple tasks. In my case I can just wlan to the toilet and back, just about 10 yards or so in total and then my legs need at least an hour to recover. Which I know is completely normal and all in my mind and you cure my muscles and mitichondria with simple talky talky backed hot steam fried air.

This is such a defining sign and symptom that you won’t find it in the Oxford, CDC, Fukuda or NICE criteria because they are NOT INTERESTED in ME. They only care about money and telling porkies, it is that simple would the Clarkman say.

Now the big question for me as a petrolhead is, when is he back and when will Captain Slow stop drinking his wines and driving around California in a campervan the size of Russia with an Aussie or why else is he called the Wizard of winery, Mr Oz????

The other thing we need is a Mr Lauda-like sort of person who always calls a spade a spade, regardless of who he is talking about. And I know exactly what he would say about these CBT fanatics, wouldn’t you???

I have put the following video in about an accident between Albers and Ide. It is very clear that Ide is at fault and you do NOT need to speak any German or Austrian for that matter to understand what Mr Lauda says about Mr Ide…. For those of you youngsters, Mr Lauda is Niki Lauda, three times world champion in formula one. He went racing against the wish of his family, borrowed an enormous amount of money and went almost bankrupt driving a BRM which was notorious for one thing………..breaking down.

But somehow he was still that good that he managed to land a drive at Ferrari and if it wasn’t for that dreadful accident he would have been champion 3 years in a row.

In the middle of a season a few years later, while driving for Brabham he suddenly decided to stop as driving around in circles was just ludicrous. He had done a similar thing in the year of his accident, he was given his last rites but was still driving a Ferrari again six weeks later, minus his ear. At the last race of the season the weather in Japan was just atrocious and after 2 or 3 laps of driving in the rain with no visibilty at all, he parked his car in the pits and got out even though he was still on course to become world champion.

His team urged him to say that he had a mechanical failure of some sort, not the engine as that was not allowed in a Ferrari but Lauda being Lauda said he was just scared to death as he could not even see the nose of his own car let alone where he was going. Now such a man at the RSM conference would have been a cracker….

Oh, and a few years later he came back, drove for McLaren and beat the much faster young kid on the block Alain Prost by being a lot smarter and so he was World Champion for the third time. And yes, he is a sort of F1 hero to ME. So listen carefully what he says, and then think CBT-ism and RSM. Funny actualy if you think about it, BRM and RSM sound very much alike, and if you want to know what happened to BRM, just have a look at the list of teams that compete in the F1 championship. Almost as soon as Lauda moved to Ferrari, more than thirty years ago, BRM went bust…..

PS: Mr Lauda said: Ide is an IDIOOO… as youtube has removed the video with his comments, maybe done by professor CBT ....

Thursday, May 15, 2008

RSM and Stand back a minute !

Yes, some strong words, but just read Greg's article and you will see why.....

By: Greg Crowhurst,
14th May 2008

A Cartesian reflection on the RSM letter to Jan van Roijen (which was send to my and I assume many others as well as a standard reply full of bullshit, but just read what Greg says about it. And everybody who has been wishing me a speedy (!!!!) recoverey, MUCH APPRECIATED

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 the 4000 published clinical studies on ME, which they apparently ignore: 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. (and be violently sick of so much psycho stupidity , my addition............)

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

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

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.

Such a clever take over from such a simple
statement, as this severe ME sufferers poem

But then there is the psychiatric lobby
who have intentionally set out to negate my reality
based on nothing more than whim and whimsy
fabrication and aggrandisement,
without the slightest hint of evidence-based integrity.
Yet still in their arrogance
they persecute and deny me
And all the thousands like me
too ill to properly engage in the world or make truth
of their existence known,
too ill to fight their corner.
Yes, my life is bizarre and disturbed and certainly it
feels unreal,
but it is not half as insane and unreal
as the emptiness
at the centre of their argument.

Linda Crowhurst 2008

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
* Only intense suffering, hopelessness and even

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.


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)

Marks L (2007) What is ME?

Williams M (2004) Paradoxical Proliferation of
Professorial Psychiatry?

PS: the original cartoon with almost the SAME wording appeared in the TIMES at the end of last year I think, just see for yourself:

Wednesday, May 14, 2008

ME and a relapse ...

My brain has just had a relapse so I am behind in responding to emails etc. I am sorry about that but I can't read very well at present. I wil try to GET back and answer everybody but it will be a lot slower than usually I am afraid.

I am also not sure yet if the relapse is a sign of malingering, neurasthenia, a somatoform autonomic dysfunction, a simple but horrible form of an unspecified somatoform disorder, just simple malaise and fatigue or pure senility.

At least that is what the CBT bloke said at the RSM. That it could and is a sign of ME was too difficult for him and is not very NICE as most of you know all too well ...

Have a NICE day.........

Friday, May 9, 2008

In Memoriam Matthew Hoddy, ME patient...

Source: East Anglian Daily Times (EADT):
"A YOUNG man from Colchester who had been plagued by ME for 10 years took his own life, an inquest has heard.

The father of 20-year-old Matthew Hoddy told Chelmsford Coroner's Court yesterday that his son “believed in reincarnation” and wanted to end his life and begin a new one.

The inquest heard that Matthew had suffered from ME (Myalgic Encephalopathy) since the age of 10.

ME is a chronic disabling illness with a range of symptoms including severe fatigue, joint and muscular pain and mental confusion."

Response by Dr John H Greensmith:

The overwhelming lassitude, the excruciating muscle pain and the bewildering cognitive impairment, experienced by M.E. (Myalgic Encephalomyelitis)sufferers, together with the social isolation and fragmented relationships that this dreadfully disabling neurological illness brings, may be sufficient for some to decide to end their own life, rather than endure it any more (Man, 20, plagued by ME took own life (East Anglian Daily Times, 7 May 2008).

But, so long as M.E. attracts suspicions of malingering and hypochondria and the derision that goes with those and so long as M.E. sufferers are treated as though they have a psychiatric illness, sometimes even sectioned against their will, scarring them for the rest of their life, there will remain the possibility, at least, that these negative attitudes, lack of support and inappropriate treatment made a significant contribution to taking another life, perhaps needlessly.

Yours sincerely
Dr John H Greensmith

Thursday, May 8, 2008

US Researcher Announces Successful Antiviral Treatment For A Subset Of ME/CFS Patients

Researchers have identified distinct subtypes of myalgic encephalomyelitis (ME/CFS – also referred to as chronic fatigue syndrome) and there is renewed hope that treatments are available for this debilitating neurological illness.

One of these researchers is Dr A. Martin Lerner from Michigan, USA who will be revealing his ground breaking data from observations over the last seven years at the forthcoming International ME/CFS Conference 2008 in Westminster, London, on 23rd May.

The theme of the conference is Sub Grouping of and Treatments for ME/CFS and the conference is changing the view that ME/CFS can be treated with a one-size-fits-all approach to treatment which the government and the National Institute for Clinical Excellence (NICE) have been advocating until now.

There is growing evidence of different subtypes and viral involvement in ME/CFS and the conference has aroused interest from the Chief Medical Officer and the UK Medical Research Council, both of which will be represented at the conference.

Other speakers at the conference include .......

Now why were there only psycho babblers at the RSM.....

Tuesday, May 6, 2008

SOPHIA MIRZA: The life and early death of a severely affected ME patient, compiled by her mother, Criona Wilson

The Sophia Mirza Archive, compiled by her mother, Criona Wilson.

The life and early death of a severely affected ME patient.

Hospital doctors have a wry saying that "physicians bury their mistakes - psychiatrists lock theirs up".

In a sense, Sophia Mirza defied both of these options. Her forced detention within a mental hospital was reversed within weeks. And although she died as a consequence, her voice lives on. She still bears witness against those who persecuted her.

That her voice can still be heard is due to her mother Criona Wilson who, uniquely, has published her daughter's confidential medical case notes online. With visionary foresight, Sophia tape-recorded crucial interviews between herself and her doctors, and the transcripts form part of the archive. Sophia was lucid, rational and defiant to the last.

ME patients are unfortunate with their doctors. While most other patient groups have a trusting relationship with the medical profession, far too often ME patients complain of neglect, abuse, misdiagnosis and stigma.

Our patients have a visceral dislike of the psychiatric construct of ME, and for good reason.

Besides the disadvantages of misdiagnosis, it forces them into a clinical environment where the validity of their opinions is routinely delegitimized, where their right to give informed consent is often not respected, and where in some cases they may be subjected to involuntary detention.

These are fears which lurk in the minds of all ME patients. For Sophia Mirza they became a nightmare reality.

This online archive provides a compelling narrative of Sophia's last years.
But it is a painful and frightening experience to read her case notes. For this is the kind of tragedy that has the potential to affect many other patients, and from which many of us have escaped only by good luck.

The narrative has the quality of a real life drama documentary, and hopefully will raise awareness among an audience beyond the confines of the ME patient community. There are close up factual portraits of patient and family, the psychiatrist, the GP and the social worker.

The ineptitude of the NHS in respect of ME degrades many patients. But the nature of the disease inflicts its own humiliations on patients and family.

The grim reality of life for the severely affected is described here in unsparing detail. It required considerable moral courage for Criona to publish this archive unedited.

It is possible for good to come out of tragedy. Sally Clark, Trupti Patel and Angela Cannings suffered miscarriages of justices: but now it is much more difficult to falsely accuse bereaved young mothers of Munchausen's by Proxy.

Sally Clark and Sophia Mirza were both martyrs, literally, to medical failure at institutional level. But Sally Clark's case fatally undermined "Meadow's Law". Hopefully Sophia's tragedy will have the same effect on "Wessely's Law".

Horace Reid, 1 May 2008.

Criona arranged the documents in four sections.

1. The red section gives a chronological list of 213 documents from Sophia's medical records. A large and representative selection are published online.

2. The blue section contains Social Services documentation, including the warrant to search for and remove Sophia, and the report from the independent investigating officer.

3. The purple section contains correspondence with the Attorney General's Office.

4. The fourth section, (also red) contains Criona's correspondence with the GMC in respect of six doctors.

For ease of downloading I (=Horace) have divided them as follows:

1. Sophia's medical records:

MirzaGMC1 (7.5MB),

MirzaGMC2 (6.8MB),

MirzaGMC3 (7.4MB),

MirzaGMC4 (5.9MB),

2. Social Services:

MirzaSS1 (5.5MB),

MirzaSS2 (4.3MB),

MirzaSS3 (7.4MB),

3. Attorney General's Office:

SophiaLeg1 (5.8MB),

SophiaLeg2 (5.5MB),

4. GMC Correspondence:

MirzaDrs (6.4MB),

A comment by Daphna, studying to be a doctor:

"I am horrified, but not entirely surprised by the behaviour of the GPs and psychiatrists involved in this case. I am currently medical student, and I can promise you that I will never forget this case when I am a doctor.

I think that the attitudes towards CFS are changing (no doubt largely thanks to Sophia and her mother), but there are still many women who are treated as mentally ill, simply because doctors cannot readily explain the causes for their disease. I send my wishes for full recovery of all the patients using this site, and thank you for sharing your story."

Source: Invest in ME's May 2008 newsletter and superbly put together by HORACE REID.

Many thanks HORACE for all your hard work and for CRIONA to have the courage and determination to put this out for the world to see and hopefully do something about CBT-ism....and delusional psychiatry...

Sunday, May 4, 2008

Robbins need CBT just as much as ME patients...

First professor CBT said we are lazy people and then recently he published an article stating that on average people with CFS, as he can't GET the word ME over his lips, are in general more active and sporty before they fell ill with CFS then the average person.

Even more so, we continue to do so while we are ill as we don't want to give up until we realise that we just can't continue to do our sports etc. So in fact our beloved professor says here, GET is useless and actually very dangerous as we all know to well ...

And now he has published a paper that the ONLY use of CBT is to help you cope with fears and anxiety, so again, he is actually finally acknowledging the fact that ME isn't cured by CBT and that CBT in a person who really has ME is utterly useless, a bit like watching paint dry...

I just wonder, has he told his counterpart in that little town in Holland, who keeps on producing weekly newsbulletins that he cures 70% of CFS patients with CBT.

If you have a look at the English articles on the excellent Dutch site by FRANK TWISK, who analyses all these articles and then if you count and see how well the CBT people are at creative accounting about 0.000001% of people with CFS actually improve with CBT.

And yes I agree, that is an amazing achievement.

So if you ask me, what have the ROBBINS and smoking got to do with each other, well just as much as CBT with ME ...

Have a GOOD DAY...

Friday, May 2, 2008

AFME and it's links with the psycho movement...

Some info about KAAZOOM, the maker of this great video:
"In December 2005 I suddenly developed a neuorological condition within days of having a flu jab. I was left with an altered sensation down the right side of my face, speech problems and problems with balance. Ever since then my conditon has worsened, and I now have difficulty walking, my right foot drops so that my toes drag on the ground, and my legs will only move slowly. I also get myoclonic jerks which cause the whole of my upper body to jerk upwards rather like I have been startled. I have no control over these movements.

Since December 2005, I have suffered various neurological symptoms, seen three different neurologists and had numerous tests, all of which have been normal. I recently lost my job as my illness has meant that I haven't been able to work.

I have recently been given a diagnosis of M.E. I intend to make videos about my experiences of this disease with the hope that I may be able to help raise awareness of it and hopefully be of some help to other sufferers."

More from him and ME.......

If you have a good look at this picture it wil say: "What's happening in biomedical research?" and the answer is quite simple. As AFME you just go to a psycho babble conference and support the denial of a neurological illness and the wasting of money on CBT and GET and you support CBT trials. Supper dupper job guys, well done...

Now some would say it is better to spend money on watching grass grow than supporting CBT for ME, others would say you might as well watch OZ and Captain Slow go on a wine drinking expedition in the biggest camper van on earth, even Americans were astonished and they love their cubic inches like no one else on this planet, but others will say that wasting money on psycho babble is what life in this day and age is all about. And the trouble is, they are blo... well right.....

So please AFME keep on supporting your psycho friends, what did you say, you are an ME charity trying to do something for yourself...


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