The Psychiatric view of ME/CFS. What is it?

[Alice Band]

Esther,

You say that people with CFS may be cut off from areas that may help and you speak about your friend who had an accident. Very sorry to hear about your friend.

The thing that you may be forgetting is that there are people with CFS & ME all over the country going through psychological therapies every week.

I was one of these and tragically for me they didn't help. I'll do anything to get better and I don't care what it is.

People with CFS and ME are desperate to do things to make themselves better - regardless of whether they are psychological or physical therapies.

The problem is, that just in my case, the psychological ones are not cures for us (nor the physical ones).

We are obviously different from your friend injured in an accident. There is no one size fits all treatment for different diseases or injuries. I've had friends who have had accidents that are still injured - even after psych and physical therapies.

If they worked we would be lining up to pay for them (as people with ME and CFS are paying for different experimental treatments each day).

 

[Esther12]

Alice,

I didn't mean that the sort of exercises that helped my friend would be of any use to people with CFS. I was just using that as an example of behavioral therapies that aided a non-psychological medical condition. Currently the behavioural treatments being explored for CFS seem based on largely discredited models of the illness (although I get the impression that there's an increasing attempt to break the link between these models and treatments like GET). I worry that this could be distorting a potentially useful avenue of research.

From my reading, it does not seem that CFS is a psychological condition. I'm still open to the possibility that it could be, and I still think psychological treatment could be helpful for people dealing with the difficulties of CFS, but I've never found a psychological model that's been well supported by the evidence, or seemed to work as a plausible explanation for my experience of CFS.

Maybe my posts were not clear enough.

 

[Mark]

From my reading, it does not seem that CFS is a psychological condition. I'm still open to the possibility that it could be, and I still think psychological treatment could be helpful for people dealing with the difficulties of CFS, but I've never found a psychological model that's been well supported by the evidence, or seemed to work as a plausible explanation for my experience of CFS.

Maybe my posts were not clear enough.

Your position on this has always seemed quite clear and respectable to me Esther, and while I have less of an open mind than you to the potential usefulness of CBT for myself or anyone else in similar circumstances, I still agree with you we should always keep some interest in all possibilities. It's not about closing down avenues completely but rather about opening up all the others - and XMRV could be the key to that of course.

For some people therapy can be all well and good, not for CFS in my opinion but to help with certain factors common in many/most chronic illnesses. I suggest reading A Handbook of Individual Therapy (Wendy Dryden?) before choosing a school and then choosing a therapist from your preferred style, person-centred is my preference by far, but myself I'm resisting CBT and that's a personal choice but strongly felt and based on my experience and reading. I personally find the offer of the CBT and the circumstances and history behind this offer offensive and suspicious and I don't think it would be helpful for me at this time, even if modern versions are sanitised, I prefer to consult wise friends, but CBT may conceivably be helpful to some people (like those with depression) at certain times. It seems to me it's all a question of what idea you want to program your mind with and why, which I figure is up to me to decide.

 

[Quilp]

Hello Esther12

I think it's possible that for some people with CFS, there could be some sort of neurological problem which alters their responses to bodily signals. An internalised alternative to PTSD.

I have no problem with the psychiatrists exploring and testing ideas like this. Maybe they'll find somthing useful.

The big problem I have is this sort of attitude:

"Etiological theories for CFS abound but none are established. Some of these theories are clinically unhelpful whatever their scientific merits. Thus, the belief that symptoms are due to a persistent viral infection of muscle may or may not be true but more importantly is clinically unhelpful."

A lack of commitment to the truth, or even a belief that an honest exploration of the reality of CFS or it's possible physical causes should be avoided out of fear that the truth would harm a patient's recovery. Such an attitude means that it's proponents have effectively excluded themselves from the debate. They cannot be taken seriously even when their claims could be worthy of serious thought and discussion.

I think this is dangerous. Sometimes behavioural treatments are the best available for neurological damage. My friend was seriously ill for two years with CFS like symptoms, combined with problems with his sense of balance. After spending a long time dismissing him as a malingerer, or psychologically ill, they eventually put him in a brain scanner, ran some tests, and realised that his symptoms were caused by a car crash he'd had five years earlier, and that minor brain damage had eventually led to their onset. He's now recovered after following behavioural treatments and exercises. We know that viral infections can cause neurological damage too. That such potential treatments for CFS are so entangled with prejudices and incomptentence have cut us off from what could be a useful avenue to explore.

At least Peter White's paper on Exercise Phobia was honest in it's conclusion.

The proponents have effectively excluded themselves from the debate;why do you think this is ? Why would such well educated learned scientists at the height of the careers, at the zenith of their science promulgate a doctrine that is incongrous with rationale ? You can only draw one of two conclusions :- that the proponents do indeed have our best interests at heart and that they believe in what they do; secondly,they have followed a line of reasoning that addresses other considerations that are not in the best interests of patients.
On the former they have singularly failed because the overwhelming evidence is that their approach is unhelpful, even damaging. Despite this their position hasn't changed. Indeed in the face of such growing evidence and criticism they have sought to fortify their stance with spurious claims of a link between child abuse and ME. Not only was this paper extremely upsetting to many, it had very little scientific basis. That in itself isn't damning but their 'creativity' doesn't end there.

My own personal belief is that in the late eighties the Wessely school really believed in what they were doing, that they were trying to help. As the years rolled by they became increasingly powerful just as the evidence against their stance began to increase. This seems like a strange dichotomy; that two
threads of evidence so diametrically opposed could grow alongside each other at the same time, until you consider why the Wessely school have become extremely powerful. It is my belief that the fertile ground upon which they grew was ploughed and seeded by HMG. The bottom line, it's always the bottom line.

Kind regards, Mark

 

[Mithriel]

Orla has summarised beautifully the case they make for a psychological cause of CFS.

The entire structure is built upon the idea that there is no PHYSICAL reason for CFS or ME. This means they must ignore, trivialise or denigrate every single piece of evidence which shows a process in our bodies which is not identical to a healthy person's.

One SINGLE piece of evidence is enough to topple their theories - and there are thousands.

Their ideas are just WRONG. The Earth is not flat, some things are either true or untrue. If some people are helped by their treatments they did not have CFS and certainly not ME because these are physical diseases. Any "help" has to be coincidental because what they say is wrong with us is false.

There may be aspects of psychology which help people with chronic long term illness but they have a different theoretical underpinning and are applied differently so mustn't be confused with what is on offer here.

From the start I could never understand why they could say it was psychological when they admitted that not 100% of people had psychological problems

Mithriel

I am not saying anyone helped by a psychologist did not have CFS, just that the help they got was incidental and didn't come because their underlying disease was wanting a sick role etc.

 

[Orla]

Hi Quilp, good points. Esther and all, the basis for CBT treatment of ME/CFS is fundamentally flawed. It is based on the idea that ME/CFS patients are stupid and/or lazy. That is what it boils down to.

If anyone watched those training video's this comes across very much. http://www.youtube.com/watch?v=bvArXvqAMiA You would think we were complete idiots if you saw that and didn't know a patient well (there is hilarious stuff about erratic drinking patterns, like that is a common problem in ME, not!)

Patients with ME do more when they feel better. The vast majority are not going to need someone telling them to do more in order to do it (once they are up to it)

There is overwheming evidence that ME/CFS is not psychiatric. They have already beaten that dead horse over and over again, and are still doing it. Personally, I don't see the point in trying to resurrect the theory as it has already been falsified as much as it can be. (It is almost impossible to disprove some psychological theories, so one has to go on probabilities and a reasonable interpretation of the biomedical evidence).

I have come across some patients before who want to think it might be psychological, or partly psychological. In some cases these were misdiagnosed cases, but in others they seem to be ME/CFS but are desperate for a cure so would hold on to anything. But this is not a good scientific reason for thinking it.


For those who are sick reading all those awful quotes, there is some cracking stuff here from a UK neurologist Abhijit Chaudhuri http://www.ahmf.org/g-chaudhuri.html

It is a commentary that he sent in on the draft Australian Guidelines from 2001 (the final guideline was a lot better than the draft but still flawed):

"The last sentence of the first paragraph should be deleted (Graded exercise programmes have been shown to be safe for people with CFS, and can improve both aerobic capacity and functional status) since it is plainly inaccurate due to the following reasons:

Firstly, no study of graded exercise programme has been carried out in the modified CDC defined population with CFS. Secondly, graded exercise programmes are not entirely safe for patients with CFS since some patients may experience serious deterioration of their symptoms after exercise. Thirdly, no long term study has established that graded exercise programme can significantly improve aerobic capacity in CFS."

It appears that the RACP has failed to recognise that post-exertional malaise is a valid CFS symptom. There is no evidence that patients with CFS demonstrate avoidance behaviour to physical activity as claimed. Even if graduated exercises were effective in CFS, it does not imply that CFS symptoms are contributed by an avoidance behaviour to physical activities.

-----------------------------------

"... the RACP has failed to take note of the most recent prospective study of people exposed to a common viral infection (infectious mononucleosis) which clearly confirmed that there is no higher incidence of pre-morbid psychiatric diseases in those who eventually develop CFS after the viral illness.

In the third paragraph, the document confuses the issue of the somatoform disorders and CFS. Fewer than 5% of CDC-defined CFS population would fulfil the DSM-IV diagnostic criteria for somatoform disorders as shown in a published study. However, this has not been referred to. Somatoform disorders are seldom confused with CFS where symptoms of fatigue are usually acute and of new onset, with a previous history of normal health. Only psychiatrists may find this distinction difficult, as appears from the cited references.


"...I am surprised by reading the following statement (last paragraph, last line): "This is in sharp contrast to the widely held but inappropriate belief that prolonged rest and social withdrawal should be advocated". Where did the RACP discover this "widely held belief"? [/B]Studies have shown that an average patient with CFS only takes the equivalent of "prolonged rest" for 3 days in a typical month. Most CFS patients would like to avoid social exclusion (preference for social exclusion is uncommon in CFS and common in major depression). I believe this is a good example where the authors of the RACP guidelines have made an erroneous statement solely based on their personal belief rather than the evidence-based science.

 

[Orla]

Frivilous but funny

Reading some of what the psychiatrists say about ME/CFS reminds me of these characters from fictional books.

From Alice in Wonderland (this would about describe the way their version of a CFS patient doesn't compare at all to what patients are really like, but they still set the agenda)

"When I use a word, " Humpty Dumpty said, in rather a scornful tone, "it means just what I choose it to mean - neither more nor less."

"The question is", said Alice, "whether you can make words mean so many different things"

"The question is," said Humpty Dumpty, "which is to be master - that's all".

-------------------------------------

And from Oscar Wilde's The Remarkable Rocket (children's story) (reminds me of how the psychiatrists seem to see themselves and the world, and weave these tales about what ME/CFS is supposed to be, but it has nothing to do with reality):

Common sense, indeed! said the Rocket indignantly; 'you forget that I am very uncommon, and very remarkable. Why, anybody can have common sense, provided that they have no imagination. But I have imagination, for I never think of things as they really are; I always think of them as being quite different."

...."You are a very irritating person," said the Rocket, "and very ill- bred. I hate people who talk about themselves, as you do, when one wants to talk about oneself, as I do. It is what I call selfishness, and selfishness is a most detestable thing, especially to any one of my temperament, for I am well known for my sympathetic nature. In fact, you should take example by me; you could not possibly have a better model. Now that you have the chance you had better avail yourself of it, for I am going back to Court almost immediately. I am a great favourite at Court; in fact, the Prince and Princess were married yesterday in my honour. Of course you know nothing of these matters, for you are a provincial."

"There is no good talking to him," said a Dragon-fly, who was sitting on the top of a large brown bulrush; "no good at all, for he has gone away."

"Well, that is his loss, not mine," answered the Rocket. "I am not going to stop talking to him merely because he pays no attention. I like hearing myself talk. It is one of my greatest pleasures. I often have long conversations all by myself, and I am so clever that sometimes I don't understand a single word of what I am saying."

"Then you should certainly lecture on Philosophy," said the Dragon- fly; and he spread a pair of lovely gauze wings and soared away into the sky.

 

[Esther12]

My own personal belief is that in the late eighties the Wessely school really believed in what they were doing, that they were trying to help. As the years rolled by they became increasingly powerful just as the evidence against their stance began to increase. This seems like a strange dichotomy; that two
threads of evidence so diametrically opposed could grow alongside each other at the same time, until you consider why the Wessely school have become extremely powerful. It is my belief that the fertile ground upon which they grew was ploughed and seeded by HMG. The bottom line, it's always the bottom line.

Kind regards, Mark

(Sorry - this is a poorly constructed post - I don't really have time to write today, and shouldn't have started typing. I'd been thinking about these things myself yesterday, but I've not really decided on anything yet. Feel free to ignore it.)

People's beliefs can certainly be influenced by how they think these different views of reality will affect them. If you've spent your career treating CFS patients as if they were psychologically disturbed, then it will certainly be emotionally uncomfortable to then recognise evidence which indicates this is not the case. Apparently we tend to be very poor at accepting evidence which goes against our own prejudices - I've read that such information triggers the same neural correlates as the disgust we feel when smelling something terrible, and we just want to get away from it.

There are also vested interests in treating CFS as psychological. Some of this is not entirely illegitimate: you can understand why the government would not be keen to pay for lots of expensive tests unless they lead to a clear and effective treatment.

I think CFS also throws up confusing philisophical and political issues about free will, personal responsibility and the commitment to equality of opportunity. We're increasingly coming to realise that a number of traits that society morally condemns have a biological and genetic basis. A tendency towards violence seems to correlate with various hormonal imbalances and genetic markers. Yet we do not treat the violent as patients, but as criminals. We also venerate those who work especially hard, and achieve a lot, while condemning those who seem to lack the motivation and drive to do so. At what point do people deserve to be condemned for their behaviour? Should those who only became violent after a virus caused neurological damage be treated more leniantly than those whose whose gene are associated with violence?

Some of Wesseley's earlier papers seem to touch upon such issues. (I'm afraid I'm not well read enough, and my memory is not good enough to speak authoritively about this, so please correct me if I'm wrong). I think it's possible that the psycho-social model of CFS is not the same as saying CFS has no physical cause - rather than indicating that any physical cause is irrelevent ("Etiological theories for CFS abound but none are established. Some of these theories are clinically unhelpful whatever their scientific merits. Thus, the belief that symptoms are due to a persistent viral infection of muscle may or may not be true but more importantly is clinically unhelpful").

There's a widespread sense that we create our own reality. That our beliefs are more important than what the evidence shows, and that these beliefs should be guided not by an honest attempt to understand reality, but by a desire to find the most 'useful' or 'healthy' beliefs. Even if CFS was the result of a neurological or biological cause, patients should be encouraged to take responsibility for their own perceptions anyway, and be trained to muddle through their illness, causing as little trouble for society and the medical profession as they can. People have no right to be healthy, and the notion of 'equality of opportunity' is a lie which raises expectation to unrealistic heights. It could well be that those with CFS will never recover, but they should be convinced otherwise so as to minimse the inconvenience they cause others.

This is a rather meaningless sample of two, but I have spoken with two people who have 'recovered' from CFS. They were certainly far more healthy than I, but the way they spoke about their illness was very strange, describing symptoms they still had, which were clearly unlike the experiences of a healthy person, but also insisting they were fully recovered, or even that these continuing symptoms were somehow an advantage, by giving htem early warning of when they needed to rest. They also seemed to have adopted a very strang view of life, an exagerated version of the misplaced contentment we can all fall into ('Everything in life happens for a reason', 'People get what they deserve.'). It was as if they'd adopted world views that made legitimate concerns or anxieties impossible. I still have a slight fear that I may have to choose over becoming a demented simpleton or staying ill - that maybe my brain is incapable of dealing with reality, and that my fatigue is a symptom of my sanity. If this were the case, I don't think that much of the psychological lobby would see any problem with the trade off: there's no reason to tie beliefs to reality, they're merely tools to be used to guide people's behaviour.

Brief attempt at a psycho-social model: Some people are psycholoigcaly and neurologically unsuited for dealing with reality, this could be the result of genetics, neurological damage, infection, it makes no difference. Prior to the rise of liberal notions of equality of opportunity, most of those those who were chronically fatigued had to choose between starvation, or pushing themselves to survive, in our current social setting, people can choose to maintian their sanity and place the burdon on others, thus allowing for an illness like CFS. If people are unsuited for dealing with reality - tough. Graded Exercise allows people to become used to and desensitised towards the problems of fatigue that they will have to experience in order to stop being a burden on others - it will also allow for the body to recondition itself, and exertion to become less of a problem. There may be some whose body cannot withstand such exertion, but the overall benefits to society of adopting such a policy will be enough to legitimise the setbacks of individuals. This should also be seen as part of a fightback over the increasing medicalisation of personal attributes which is serving to undermine notions of personal responsibility.

I'm afraid I will not have been clear enough in this post. I was thinking and changing my mind while typing. I don't think my psycho-social model is the same as the one Wesseley etc promote (I have no reason to thikn he has any interest in the 'rationality' of his patients one way or the other), but I tried to include some elements which I think do play a role in his thinking and don't seem to be mentioned much by others here. From my reading of his earlier work, he does see his CFS research as part of a social, politcal and philisophical project. It's all quite interesting, but I wish he'd been doing it in a philosophy department where it could have been safely ignored.

I'd meant to mention the recent Wesseley paper on treating fatigue in those with cancer, MS, etc, as if it were psychological, but I'm not sure where to slip that in.

 

[Alice Band]

No worries Esther,

Are you aware that people with ME have been treated with different psychological therapies and been committed to Psychological hospitals for decades, and that cures through these methods have not eventuated?

As a Support Group leader before CBT was widely used I met many patients treated in Psych hospitals and by a wide variety of different methods and psych therapies. Private therapy of all different types because they were desperate to get better and would pay for treatment.

This does tend to rule out your argument that the "wrong" methods are being used. It appears that the Psych route isn't able to cure anyone of ME.

If only there was a "right" psychological method patients would be lining up by the door for miles.

It's not lack of trying on behalf of the Psychiatric profession or by the patient. Merely a lack of success that is the problem.

 

[Dolphin]

Brief attempt at a psycho-social model: Some people are psycholoigcaly and neurologically unsuited for dealing with reality, this could be the result of genetics, neurological damage, infection, it makes no difference. Prior to the rise of liberal notions of equality of opportunity, most of those those who were chronically fatigued had to choose between starvation, or pushing themselves to survive, in our current social setting, people can choose to maintina their sanity and place the burdon on others, thus allowing for an illness like CFS. If people are unsuited for dealing with reality - tough. Graded Exercise allows people to become used to and desensitised towards the problems of fatigue that they will have to experience in order to stop being a burden on others - it will also allow for the body to recondition itself, and exertion to become less of a problem. There may be some whose body cannot withstand such exertion, but the overall benefits to society of adopting such a policy will be enough to legitimise the setbacks of individuals. This should also be seen as part of a fightback over the increasing medicalisation of personal attributes which is serving to undermine notions of personal responsibility.

Why should there be such a distinction between Graded Exercise and drugs?

Some drugs will help a certain percentage of people. But if a percentage (which can be less than the number helped) are damaged, the drug will often be taken off the market. One could say that the overall benefit for society might be to give the drug to everyone with the particular condition and, to use the point above, if some "cannot withstand such" a drug, that doesn't matter so much.

Instead what we try to do is learn for whom a particular intervention might not suitable rather than give it to everyone and ignore people who don't benefit or are made worse by it.

And the important thing to remember is that many people have been made worse from advice to exercise. And currently society doesn't say, let those people starve to death or whatever; instead, an extra burden is placed on society.

Also, if a particular intervention helps some people with a condition but not others, we don't just saying that's all that patients need, we look could there be other interventions that could benefit the patients. For example, with breast cancer, some people will benefit from particular drugs, while the same drug may be of little or no benefit for others. We don't throw the other people on the scrapheap or tell them to keep taking the drug, we try to learn about the others and see what other interventions might benefit. Similarly, while some people with fatigue may benefit from exercise, I believe that it is not an answer for others and more research needs to be done to see what can help these others. And a drive to see what interventions might shouldn't be restricted to non-pharmacological interventions particularly when one sees for example, that some groups can make great improvements or even recover with particular treatments (IVIG for those whose CFS followed Parvovirus B19 is one example).

 

[Martlet]

We tend to over-worry about our symptoms and about what might make our symptoms worse, e.g. exercise, and this causes us to have totally exaggerated and irrational fears about doing normal activities. This is sometimes called "catastrophic thinking".

Which, I suppose, is why my doctor told me off for taking my dog for a walk after my second batch of normal/borderline tests, only to crash. I suspect I am not the only one to have done everything possible to get back on my feet after what felt like some nasty post-viral fatigue that would not end, only to crash, pick myself up, dust myself off and try all over again. It was finally a psychiatrist on a US base in the UK (thank you, United States Air Force) who persuaded me to STOP fighting so hard and to live within my limitations.

Reading stuff like this makes me so angry. So very, very angry. I know I was so fortunate in my doctors in the early days and only wish everyone could have been so blessed.

 

[Esther12]

No worries Esther,

Are you aware that people with ME have been treated with different psychological therapies and been committed to Psychological hospitals for decades by that cures through these methods have not eventuated?

As a Support Group leader before CBT was widely used I met many patients treated in Psych hospitals and by a wide variety of different methods and psych therapies.

This does tend to rule out your argument that the "wrong" methods are being used.

If only there was a "right" psychological method patients would be lining up by the door for miles.

It's not lack of trying on behalf of the Psychiatric profession or by the patient. Merely a lack of success that is the problem.

I briefly spoke to someone who was sectioned by their psychologist wife when they fell ill. I'm aware that the psycholoigical view of CFS has been massively abusive to many patients, and informs the casual disregard of many GPs, the benefits system, etc.

I can speak about things in a rather detatched manner, but this doesn't mean I'm not angered by much about the way CFS is treated. I just tend not to express my anger on this forum.

I don't think the inability to find a successful pharmacological treatment for CFS means that no such treatment will be found in the future. The same is true for psychological and behavioural treatments. I'm also not as dismissive of the research which has been done showing the beneficial impact of GET and CBT as many here. It goes against my own experiences, and there are often problems with the research, but I'm still curious, and interested to see what further work reveals.

I quite understand that too many people here, these approaches are so totally discredited, and that to continue to maintain an open mind is nothing more than masochism. I'm unsure about this myself. I think it's very difficult to know what to do when you have CFS: the medical profession seem untrustworthy, the internet is full on conflicting theories, and it's seen as acceptable for people to develop their understanding of your illness based on nothing more than their prejudices.

Why should there be such a distinction between Graded Exercise and drugs?

Some drugs will help a certain percentage of people. But if a percentage (which can be less than the number helped) are damaged, the drug will often be taken off the market. One could say that the overall benefit for society might be to give the drug to everyone with the particular condition and, to use the point above, if some "cannot withstand such" a drug, that doesn't matter so much.

Instead what we try to do is learn for whom a particular intervention might not suitable rather than give it to everyone and ignore people who don't benefit or are made worse by it.

And the important thing to remember is that many people have been made worse from advice to exercise. And currently society doesn't say, let those people starve to death or whatever; instead, an extra burden is placed on society.

Also, if a particular intervention helps some people with a condition but not others, we don't just saying that's all that patients need, we look could there be other interventions that could benefit the patients. For example, with breast cancer, some people will benefit from particular drugs, while the same drug may be of little or no benefit for others. We don't throw the other people on the scrapheap or tell them to keep taking the drug, we try to learn about the others and see what other interventions might benefit. Similarly, while some people with fatigue may benefit from exercise, I believe that it is not an answer for others and more research needs to be done to see what can help these others. And a drive to see what interventions might shouldn't be restricted to non-pharmacological interventions particularly when one sees for example, that some groups can make great improvements or even recover with particular treatments (IVIG for those whose CFS followed Parvovirus B19 is one example).

I am just imagining potential justifications, and trying to sketch out an area of thought which seems under-represented here, but how about somthing like this...

The sort of competent medical approach you are promoting would serve to undermine their ability to convince patients that their fatigue is only a distorted perception, and that they should not be concerned by it. These beliefs are a necessary part of treatment, and the testing and examination of various biological abnormalities will, unless they are able to lead to a cure (which rarely seems to be the case with CFS) only be detrimental.

There may well be numerous different causes for CFS like symptoms, which currently cannot be accurately identified or treated. Trying to do so could serve to reinforce the view that these symptoms are somthing which doctors and society have a responsibilty to solve, rather than patients have a responsibility to manage with them.

If there was solid research proving GET to be damaging to those with certain abnormal test results, then that would have to be adopted into the GET framework, but if there is not, then even looking for one could be a dangerous reinformcent of the tendency towards the medicalisation of symptoms.

CFS is, by definition, a disease with an unknown cause - it's designed as a wastebasket illness, and treatments should be designed to manage these patients.

[edit from the future: To be clear, I was presenting an argument for beliefs I did not hold - looking back, I can see why some of my posts led to heated replies!]

 

[fresh_eyes]

Hi Esther12. I do think you may have a unique insight into what motivates the psych lobby - that is, sociological, rather than medical, ends.

The more I see where they're coming from, the more I think they're all profoundly unethical. It's the banality of evil.

 

[Dolphin]

If there was solid research proving GET to be damaging to those with certain abnormal test results, then that would have to be adopted into the GET framework

Why does there need to be specific abnormal tests? Why can a certain pattern of symptoms or history not be sufficient?

Also there can be the precautionary principle, where one sees enough circumstantial evidence that one doesn't want to expose people to risk.

And of course, if the requirement is for certain abnormal test results, that is going to require biomedical research to find those out but there is not a particular push for biomedical research to find out enough about the illness as can be seen by the recommendations for research in the Royal Colleges Report, the MRC research strategy (looking for causes/pathophysiology not that important - don't need them to treat a condition - this was clearer in the draft strategy and they cloaked the wording a bit in the final strategy having got feedback), etc.

----------
To all:

Exercise programs are prescribed like a drug but patients do not have the facilities like the yellow card scheme (that is available with drugs) to report adverse reactions. Adverse reactions to drugs are collected using this scheme usually without biological evidence as such (i.e. by some sort of test) of an adverse reaction.

Other evidence has been collected and for example a large AfME/AYME survey last year found that the rate of people reporting being made worse by GET that was supervised by an NHS specialist was no different from the overall percentage made worse by GET. But still proponents do not take it very seriously.

Drug companies would love if reports of adverse reactions to the treatment they promote/sell/offer could be buried. We should not let proponents of GET get away with it.

 

[Dolphin]

Exercise abnormalities that have been found in ME/CFS research, etc

People interested in exercise abnormalities that have been found in ME/CFS research, etc may be interested in

A review on cognitive behavorial therapy (CBT) and graded exercise therapy
(GET) in myalgic encephalomyelitis (ME) / chronic fatigue syndrome (CFS):
CBT/GET is not only ineffective and not evidence-based, but also potentially
harmful for many patients with ME/CFS

Frank N.M. Twisk and Michael Maes

The full text can be got for free:

Full text PDF file will be sent to your email submitted below. By requesting this file you agree that you'll occasionally receive newsletter about changes @ our scientific community portal.

Request full article
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See: http://node.nel.edu/?node_id=8918

This includes research right back into the 1980s. I'm not sure if it got everything but it covers an awful lot of research.

 

[Esther12]

It's the banality of evil.

This is something I try to think about. Some people are genuinely indifferent to the suffering of others, but it's rare. Usually people are trying to make the world a better place, and just rubbish at it.

Why does there need to be specific abnormal tests. Why can a certain pattern of symptoms or history not be sufficient?

Also there can be the precautionary principle, where one sees enough circumstantial evidence that one doesn't want to expose people to risk.

And of course, if the requirement is for certain abnormal test results, that is going to require biomedical research to find those out but there is not a particular push for biomedical research to find out enough about the illness as can be seen by the recommendations for research in the Royal Colleges Report, the MRC research strategy (looking for causes/pathophysiology not that important - don't need them to treat a condition - this was clearer in the draft strategy and they cloaked the wording a bit in the final strategy having got feedback), etc.

Yeah - if the sort of thinking I've tried to sketch out is guiding doctor's and researcher's approach to CFS, then it certainly goes against what we'd think of as good medical practice. I'm not trying to claim otherwise.

I also think that, generally and not just with CFS, medicine and science are not as closely related as many would like to think. As a society, we like to pretend our doctors understand and can help far more than they really can. Some doctors seem to feel a need to play along with this belief to provide a level of reassurance and I think they can end up believing their own act: scientists love to be challenged, doctors don't. I'd take this thread even more OT if I started writing about that though.

 

[Mithriel]

Psychological problems don't come in epidemics so there can NEVER be a psychological treatment that helps ME unless the physical damage is healed first.

Psychology will not heal a damaged heart or grow back damaged neurons.

ME has as it's cardinal symptom an abnormal reaction to exercise. Exercise makes it WORSE. You can't have a heart attack without the heart being damaged.

As Dr Ramsay said "If anyone gets better with exercise they don't have ME."

Tom, I noticed that the latest questionnaire from Sussex didn't have a column to tick for "made worse". So now they can report that no one using their clinics is made worse. Nicely done.

Mithriel

 

[xanadu]

I also think that, generally and not just with CFS, medicine and science are not as closely related as many would like to think. ... I'd take this thread even more OT if I started writing about that though.

Not OT at all. If medicine is the application of technologies based on scientific understanding, psychiatry is a protoscience at best, pseudoscience at worst. The current psychiatric approach to ME derives from much older prejudices about neurasthenia, malingering, workshyness and so on. Even if you only date it back to its reappearance the 1970s and 80s, the whole structure was in place before evidence-based healthcare emerged in the 1990s along with the emphasis on patient rights and involvement. Has any stereotype about ME patients put out by the psychs been verified? Have any trials of CBT or GET been conducted to the same standards you would expect for drug treatments? (Rhetorical questions.)

 

[Quilp]

Hello Esther12

I don't think the inability to find a successful pharmacological treatment for CFS means that no such treatment will be found in the future. The same is true for psychological and behavioural treatments. I'm also not as dismissive of the research which has been done showing the beneficial impact of GET and CBT as many here. It goes against my own experiences, and there are often problems with the research, but I'm still curious, and interested to see what further work reveals.

I quite understand that too many people here, these approaches are so totally discredited, and that to continue to maintain an open mind is nothing more than masochism. I'm unsure about this myself. I think it's very difficult to know what to do when you have CFS: the medical profession seem untrustworthy, the internet is full on conflicting theories

Thank you for your comments; this thread marches on faster than a soldier like me can deal with, so apologies for appearing to be selective in respect of your comments.

The psychiatrists labour under the misnomer that people with M.E are obsessed with the perception that GET and CBT is promulgated by psychiatrists to prevent medical research from establishing the 'truth'. I have to say that that argument is not without merit.

With reference to ME patients not having an open mind I do not believe that to be true. If one looks at the desperate measures that some ME sufferers have gone to in order to regain some semblance of normal life, with financial implications that stretch beyond all rationale, it seems incongrous to juxtapose this with such a stance. If you ask any patient with ME what they would do to get better, i'd think you'd be surprised. The fact is that many have tried GET and CBT and it hasn't worked; for many GET has made them worse. Surely that has to be a cause of concern, especially when 'so little is known about the illness' ( I think Dr Nancy Klimas may disagree )

The Wessely school has been particularly robust in fuelling the fires of suspicion by claiming that GET and CBT cure one third of all ME patients with a further one third making a significant recover. These are outlandish claims, that haven't been validated anywhere in the world, other than at their own clinics in Kings College, London ( peer reviwed and validated by fellow psychiatrists ) and yet despite this in 2004 'ME clinics' have been rolled out across the country at a cost of 40 million pounds. ( others have attached far more information about the Wessely school that adds weight to my arguments; apologies i don't have the ability to cite them all. Thanks to those posters, TomK, Orla et al )

I am not calling Simon Wessely a liar; but his interpretation of the truth is very different to mine, and many others. Against that backdrop, patients, affiliations, charities, focus groups, have reacted to the extent that open hostilty has precipitated into something none of us wanted to see. Perhaps one of the casualities of such entrenchment could be that any 'treatments' promulgated by the Wessely school that could one day prove useful, are marginalised. Now that really would be a travesty.

Kind regards, Mark

 

[mvwu]

Twisk and Maes online

People interested in exercise abnormalities that have been found in ME/CFS research, etc may be interested in

A review on cognitive behavorial therapy (CBT) and graded exercise therapy
(GET) in myalgic encephalomyelitis (ME) / chronic fatigue syndrome (CFS):
CBT/GET is not only ineffective and not evidence-based, but also potentially
harmful for many patients with ME/CFS

Frank N.M. Twisk and Michael Maes

The full text can be got for free:

Full text PDF file will be sent to your email submitted below. By requesting this file you agree that you'll occasionally receive newsletter about changes @ our scientific community portal.


Request full article
Fill in your email address at the bottom of the page:
See: http://node.nel.edu/?node_id=8918

This includes research right back into the 1980s. I'm not sure if it got everything but it covers an awful lot of research.

Tom, I just found the Twisk and Maes pdf file here:

http://niceguidelines.files.wordpress.com/2009/10/twisk-maes-cbt1.pdf

The article is refreshing, to say the least. To quote from their conclusion:

"Therefore, it is medically unethical to subject ME/
FS patients to CBT/GET programs or variants, like
GET with limits (Nijs et al. 2008), without assessing
biological abnormalities, monitoring functional impair-
ment objectively and measuring the effect of exercise
e.g. on the physical and neurocognitive performance
(e.g. by using exercise test/retest measurements, blood
analysis, and neurocognitive tests).

"When one looks at the facts and the objective data, it
is incomprehensible that CBT/GET is still promoted by
many (semi) governmental agencies and professional
organizations.

"Des Turner MP, Chair of the All Party Parliamen-
tary Group on ME (Group on Scientific Research into
Myalgic Encephalomyelitis/M.E., 2006a), described the
NICE (NHS National Institute for Health and Clini-
cal) guidelines, which recommends CBT/GET for ME/
CFS to medical professionals, as not fit for man nor
beast. Dr Ian Gibson MP described the guidelines as
useless (Group on Scientific Research into Myalgic
Encephalomyelitis/M.E., 2006b).

"I will prescribe regimens for the good of my patients
according to my ability and my judgment and never do
harm to anyone. (Hippocratic Oath).'"
​