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.

“PRESENTATION TITLE:
What is Chronic Fatigue Syndrome?
And What is ME?
What is CFS?
Peter White started off by summarising the five ways in which he believed chronic fatigue and chronic fatigue syndrome, the name preferred by most physicians, can be classified using ICD10:
F48: neurasthenia
F45.3 somatoform autonomic dysfunction
F45.9 somatoform disorder, unspecified
R53 malaise and fatigue
R54 senile asthenia
[Dr Shepherd's note: The only place that ME appears in ICD10 is in the neurology chapter under G93:3; CFS is also indexed to G93:3]
He then summarised the 7 different research criteria that have been published for CFS in adults and children:
CDC Holmes
Australian
Oxford
London
CDC 1994
CDC Revised 2003
However, as there is no evidence of a CDC defined CFS out there in the general population, this is not a useful criteria to use for clinical diagnosis.
Peter White also pointed out how research (eg the Witchita epidemiological study) indicates that for every patient with CDC diagnosed CFS there are far more people in the population with chronic disabling fatigue.
He then considered the three different clinical definitions that can be applied to CFS:
Canadian Criteria
NICE criteria (ie fatigue plus one symptom from the NICE list)
Royal College of Paediatricians and Child Health criteria
and what he felt were their relative value in clinical practice, especially in regard to their use of lists of symptoms in addition to fatigue.
Peter White pointed out that as more symptoms are used to define a core illness the more likely it is that people with a psychiatric illness will be brought into the definition. (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 ....