Lady Mar writes to Prof Wessely

[natasa778]

IVI, I can't quite believe your last post, as we've been over this stuff repeatedly, and given examples repeatedly.

Never mind evidence from third parties, many of us have got personal stories to share re the medical/welfare systems, as evidence of disinterest/neglect.

Again, we've been over this repeatedly. I refer you to the CDC, the MRC, and Jonathan Kerr.

Again, there is evidence of biomedical research being blocked by psychiatrists. (Refer to Jonathan Kerr.)

I think this is insensitive of you, IVI.
So many of us have horror stories to tell about our experiences with the medical services.

Oh come on people, we know by now that personal stories do not count as evidence in IVI's world.

Highly offensive.

 

[Holmsey]

I have, numerous times, directly highlighted this sort of attitude, of placing blame on patients, but I don't do it every time I see it.

But Bob, there is a serious point to what IVI has said, patients are not somehow separate from their illness. Would you not blame a heart or liver diseased patient who continued to smoke for being irresponsible. What about an alcoholic who after being given a liver transplant continues to drink until they need another, I can think of at least one sportsman who did just that. What about someone who is life threateningly obese but refuses to adopt the suggested life style changes deemed to be his only chance at life.

In ME/CFS there's clear evidence that stress effects our condition, in fact I doubt there's an illness known that stress doesn't, and yet many of us would refuse CBT as an inappropriate intervention when in fact it's one useful purpose is to provide techniques for stress reduction.

 

[Holmsey]

Oh come on people, we know by now that personal stories do not count as evidence in IVI's world.

Evidence is objective, stories are subjective.

 

[alex3619]

But Bob, there is a serious point to what IVI has said, patients are not somehow separate from their illness. Would you not blame a heart or liver diseased patient who continued to smoke for being irresponsible. What about an alcoholic who after being given a liver transplant continues to drink until they need another, I can think of at least one sportsman who did just that. What about someone who is life threateningly obese but refuses to adopt the suggested life style changes deemed to be his only chance at life.

In ME/CFS there's clear evidence that stress effects our condition, in fact I doubt there's an illness known that stress doesn't, and yet many of us would refuse CBT as an inappropriate intervention when in fact it's one useful purpose is to provide techniques for stress reduction.

Hi Holmsey, yes, older CBT and even CBT as generally practiced is great for dealing with stress (though I think there are better ways). I have done it myself. CBT being used in psychogenic treatment of CFS and ME is something else entirely with the same name. It uses similar techniques, but in a very different way with a very different goal. It has failed, yet its the treatment that is primarily on offer in the UK, along with GET which has also failed.

Confusing the two or more uses of CBT and claiming success in one use implies the other should be accepted is irrational.

Bye, Alex

 

[Bob]

In Britain, and I'm sure elsewhere, there is abuse and neglect in health care for sure, but it's certainly not limited to ME/CFS. I'm not sure how you can jump from that to the psychiatric model of ME being directly to blame, as I said, it's not limited to ME/CFS so there's not direct link between neglect and a psychological view of illness.

I don't see how you can come to a firm conclusion that "there's not direct link between neglect and a psychological view of illness." You argument doesn't hold. Just because neglect is evident in other diseases, doesn't mean that the psychological view of CFS has not made the situation worse for CFS/ME patients.

I'm sure the psychosocial model has been a great excuse for a lack of investment in biological research, but someone in a governing role has to make that decision, the Psyc's don't make it. So we're left asking, are they swayed by the Psychological model or simply using it as an excuse to save money, but again that's not the Psyc's.
Likewise individual clinicians will have been swayed by powerful arguments and a supportive press, but you are again left asking, is there dishonest collusion or do they 'genuinely' believe that ME/CFS is a psychological illness.

Personally, I don't really care if there is dishonesty involved. All I'm interested in is getting the situation rectified.
I'm sympathetic to the argument that Wessely & co have simply provided the establishment (doctors, government, etc.) what they want to hear, but, IMO, we do need to challenge the psychiatrists (as well as challenge the politicians and other decision makers) because the psychiatrist provide the evidence that allows others to make bad decisions.

But Bob, there is a serious point to what IVI has said, patients are not somehow separate from their illness. Would you not blame a heart or liver diseased patient who continued to smoke for being irresponsible. What about an alcoholic who after being given a liver transplant continues to drink until they need another, I can think of at least one sportsman who did just that. What about someone who is life threateningly obese but refuses to adopt the suggested life style changes deemed to be his only chance at life.

In ME/CFS there's clear evidence that stress effects our condition, in fact I doubt there's an illness known that stress doesn't, and yet many of us would refuse CBT as an inappropriate intervention when in fact it's one useful purpose is to provide techniques for stress reduction.

Actually, I was referring to other types of arguments put forward by members of this forum, in which they (perhaps unknowingly), undermine patients, and place blame on patients.

I'm sure you didn't mean it in this way, Holmsey, but one such example, of (perhaps unknowingly) placing blame on patients is as follows:

If in the end you conclude that they are not all colluding against us then you are left with no other choice but to recognize that we are loosing the battle of persuasion, loosing the battle of advocacy. Only by bringing others to the point we have reached, getting them to consider the research, getting the research into the main stream will we ever convince them otherwise.

Perhaps you make a valid point, but we have to be careful about how we phrase things, if we are to avoid being mis-interpreted, or upsetting people.

When this sort of assertion is continuously repeated, as it has been on this forum, the subtle message can potentially have a rather undermining negative effect on people, if not worded very carefully and sensitively, in a more positive way.

Patients have enough on their plates without being burdened with any suggestions that they are not doing successful enough advocacy, etc, to get their illness taken seriously.

I find the assertion that suicide is somehow a direct consequence of the way others perceive us hard to accept, but having never been that low I can only speculate. It seems to myself at least that the absence of a life, and years of illness without hope of a cure coupled with the constant presence of pain would likely render most sufferers numb to any consideration for how others may perceived them, but I confess I don't know.

How people interact with their communities and the people in their lives can have a direct bearing on mental health. There's no doubt about that.
If a doctor were to treat a patient dismissively, or tell them to 'pull themselves together' etc., (or worse), and refuses to offer compassion, care and assistance, when the patient is desperate for help and care, and at rock-bottom, then of course this can have potentially devastating consequences.

I have previously shared my own experiences of getting nothing more than a shrug of the shoulders when I first became ill, and how it affected me. No information was offered, no care was offered, no investigation was offered, etc.

All systems have faults, the larger the system the larger and the more subtle the faults but faults don't necessarily equate to neglect...

'Neglect' is a flexible word, and has many different guises in many difference situations.

...can we ever fault someone for a genuinely held belief simply because the belief is eventually shown to have been wrong?

Actually, I think we can fault someone if they are ignorant, if they are in a position of responsibility, and their ignorance has a direct deleterious affect on someone life.


(edited after posting to improve.)

 

[Bob]

In ME/CFS there's clear evidence that stress effects our condition...

Hmm, I'd be very interested to see this 'clear evidence', re CFS/ME, if you have it to hand.

...many of us would refuse CBT as an inappropriate intervention when in fact it's one useful purpose is to provide techniques for stress reduction.

The PACE and FINE Trials demonstrate that CBT is not a helpful intervention for reducing objectively-measured disability, and for improving other objective outcomes, such as employment hours and benefits claims.
For the self-reported (subjective) primary outcomes (which were subject to bias), an average of 13% of PACE Trial participants reached the threshold for a minimal improvement, after treatment with CBT/GET.
16% of participants said that they found CBT/GET 'helpful'.
So I think we should be aware that CBT has very limited benefits, but a minority of CFS patients might find it helpful.

And we have to be careful what we mean by "CBT", and what type of CBT is being offered to ME/CFS patients. Do we mean the type of CBT that is designed to address 'fear of activity' and the 'maladaptive illness-beliefs' that are alleged to cause CFS, or do we mean the type of CBT designed to address other issues, such as stress or depression? The former type of CBT has now been discredited by the PACE and FINE Trials.

 

[Holmsey]

Hi Holmsey, yes, older CBT and even CBT as generally practiced is great for dealing with stress (though I think there are better ways). I have done it myself. CBT being used in psychogenic treatment of CFS and ME is something else entirely with the same name. It uses similar techniques, but in a very different way with a very different goal. It has failed, yet its the treatment that is primarily on offer in the UK, along with GET which has also failed.

Confusing the two or more uses of CBT and claiming success in one use implies the other should be accepted is irrational.

Bye, Alex

Hi Alex, I wasn't making a defence for CBT practiced in either fashion, I was simply trying to establish as best I could that as patients we can't just put all the responsibility for getting well onto someone else.

In some cases saying 'make me better' is like saying 'make me taller', that happens to be the case for us, the real frustration here seems to be that not enough has been done to get to the point where something can be done, but rather than blame politicians or concentrate on becoming better advocates we go around in circles worrying about what was done in the past and what an injustice this or that was. As a few people have now noted, SW is an irrelevance, the Psyc's are an irrelevance, at least if all you're interested in is getting better.

 

[Bob]

Oh come on people, we know by now that personal stories do not count as evidence in IVI's world.

Evidence is objective, stories are subjective.

Not true. You can have subjective or objective evidence.

For example, the PACE Trial's (self-reported) primary outcomes were based entirely on subjective evidence, which is why the primary outcomes are potentially biased.

Also, I don't think it's helpful dismissing the first-hand experiences of the entire forum membership, as simply being 'stories'.

Actually, it's a bit disrespectful.

If the medical profession, and the psychological proponents, listened to patients more, then we would not have this level of disconnect between patients and the medical establishment, that we have been discussing.

 

[alex3619]

Hi Alex, I wasn't making a defence for CBT practiced in either fashion, I was simply trying to establish as best I could that as patients we can't just put all the responsibility for getting well onto someone else.

In some cases saying 'make me better' is like saying 'make me taller', that happens to be the case for us, the real frustration here seems to be that not enough has been done to get to the point where something can be done, but rather than blame politicians or concentrate on becoming better advocates we go around in circles worrying about what was done in the past and what an injustice this or that was. As a few people have now noted, SW is an irrelevance, the Psyc's are an irrelevance, at least if all you're interested in is getting better.

Hi Holmsey, from patient perspective I agree with you entirely. From a political perspective I am not sure this is a good idea. We do have a responsibility for how we respond. However if the authorities keep telling us to only do psych, to not research other things, that is a problem. Its one we can overcome, but many fall into the trap as other choices simply are not available, or they are not made aware they are available.

There are many levels at which these issues can be dealt with. The politics does matter. As I see it, politics is currently a brake on research and effective treatment. Its not the treatment itself, but it determines in part the rate at which the science can deliver treatments, and then the health services can deliver them.

So for a given individual the political stuff is usually irrelevant. For us all, collectively, it is however important.

Bye, Alex

 

[Bob]

Hi Alex, I wasn't making a defence for CBT practiced in either fashion, I was simply trying to establish as best I could that as patients we can't just put all the responsibility for getting well onto someone else.

Why are you suggesting that some of us don't try to improve our lives the best we can?

I don't know if you are aware, Holmsey, but some of your recent posts (including the following post) have come across as deeply disrespectful, and patronising.

In some cases saying 'make me better' is like saying 'make me taller', that happens to be the case for us, the real frustration here seems to be that not enough has been done to get to the point where something can be done, but rather than blame politicians or concentrate on becoming better advocates we go around in circles worrying about what was done in the past and what an injustice this or that was.

As a few people have now noted, SW is an irrelevance, the Psyc's are an irrelevance, at least if all you're interested in is getting better.

As you say, not everyone has said that SW is an irrelevance. It is not an opinion shared by everyone.

In general, I think you're missing the point of many of the discussions, Holmsey.
This happens to be a Wessely discussion thread, and some of us think that the Wessely school's output is important to our lives, and other CFS patients' lives.
But that doesn't mean that anyone is obsessing about him.

Personally, I absolutely don't agree that SW & co are irrelevant, especially in terms of our own personal health.
If I did agree that the Wessely school is an irrelevance, then I wouldn't be posting on this thread.
But I do think it's essential to focus on their output, rather than on personalities.

Again, you seem to be accusing of patients of not wanting to get better, because the have some sort of obsession about Wessely. This is a very worrying accusation.

May I suggest that if you are not interested in Wessely & co, and their research, that you just don't go to threads that have 'Wessely' in the title? And let those who are interested in discussing the psycho-social research, continue to do so, without being accused of all sorts.

 

[Holmsey]

I don't see how you can come to a firm conclusion that "there's not direct link between neglect and a psychological view of illness." You argument doesn't hold. Just because neglect is evident in other diseases, doesn't mean that the psychological view of CFS has not made the situation worse for CFS/ME patients.

Isn't that a double negative, I say you can't make that conclusion and then you say I can't make the conclusion that you can't make the conclusion...I got lost somewhere, so you're saying you agree with the earlier leap but not with my suggesting that it's a leap.

Personally, I don't really care if there is dishonesty involved. All I'm interested in is getting the situation rectified.
I'm sympathetic to the argument that Wessely & co have just provided people, and government, what they want to here, but it is the psychiatrists who we need to challenge the most (as well as challenge the politicians and other decision makers) because they provide the evidence that allows others to make bad decisions.

I disagree, it's government we need to challenge the most, research will take care of the Psyc's, as you say they're providing 'evidence' and only counter evidence will thwart that. Only Government can give us what we want, not the Psyc's (IMO).

When this sort of assertion is repeated, and continuously, as it has been on this forum, the subtle message can have a rather undermining negative effect on people.

There are a great many here who get quite heated and take upon themselves things which neither concern nor effect them, like SW getting an award or SW getting a Knighthood, whether they realise it or not they choose to negatively effect themselves. Brining focus to that, in a compassionate way, can surely only liberate them from unnecessary suffering. Great thing to remember is that we own hate, we own anger, it doesn't belong to it's focus, they just go off to sleep mainly oblivious while In general the owner spends sleepless hours tormenting themselves at a perceived injustice that rarely has any real effect on their lives.

How people interact with their communities and the people in their lives can have a direct bearing on mental health. There's no doubt about that.
If someone treats a patient dismissively, or tells them to 'pull themselves together' etc. (or worse), and refuses to offer compassion, care and assistance, when they are desperate for help and care, and at rock-bottom, then of course this can have potentially devastating consequences.

I have shared my own experiences of getting a shrug of the shoulders when I first became ill, and how it affected me.

I don't doubt it, my point was aimed at the earlier mail, I had more to say but I've deleted it, given both of us agree that consideration of others is paramount I think we should dispense with any more talk on this particular subject. I hope you understand and agree.

Yes, we can fault someone if they are ignorant, and their ignorance has a direct deleterious affect on someone else's life.

Of course we can, whether we are morally right to do so is another subjective stand. Imagine landing on another planet, a few feet away you see a magnificent flower and step toward it, latter you find you just killed 2.5 billion sentient beings with that one foot fall, while I'm sure you would be devastated wouldn't you say in your defence 'I didn't know!'.

Anyway, past bed time, speak again tomorrow.

 

[notinfinite]

I am unsure as to the motive behind the suggestion proffered that I should not pursue, in any direction I choose, my belief that SW is central to many of the problems encountered by people with ME and that he is unworthy of spending my money (via taxation) for his research using his illness beliefs dogma. I have read nothing in this thread to alter my view.

Whether the treatment(s) be the pointless use of CBT or the potentially dangerous GET or psychiatric drugs, SW is as capable of imposing dangerous iatrogenic treatments as any other shrink, it’s just that these treatments stem from his research (along with his cohorts).

I’ve done all three psychiatry suggestions, the drugs and the GET damaged me, I have no idea whether the CBT did anything, I don’t know how I could measure that. I do know the drugs are disgusting, their side effects, very serious withdrawal issues and the look on every NHS tosspot Doctor’s face when they learned I was on a low dose antidepressant (which I might add was being administered on the suggestion that it would aid sleep pattern and pain relief) is something only I can know and live with. As for the GET, the relapse lasted months and I wondered if I would get through it.

It is his problem if he feels misunderstood or is bothered by imaginary death threats or believes he is mis-quoted. I do not believe that keeping quiet and engaging with psychiatry is the way forward – it has not benefited us thus far and there is no glimmer on the horizon that it ever can help us. History shows that psychiatry is littered with casualties – millions of them.

Defending SW in any shape or form should be left to SW and his lawyer.

 

[akrasia]

As someone who lives in Britain, and has worked in support groups helping ME sufferers directly, I can say that there is plenty of medical abuse and neglect of ME patients here, and the psychiatric model of ME is directly responsible for both this abuse and neglect, and the refusal to fund adequate medical research for over a generation.

Some ME sufferers do become suicidal but this is a direct consequence of the way they have been perceived and treated.

I find arguments that try to push responsibility for this appalling situation back onto the individual sufferer highly offensive.

"I've had patients who met post-traumatic stress disorder criteria . . . where their trauma was their interaction with their physician around this illness. They came to a doctor with Chronic Fatigue Syndrome; they left the doctor with PTSD." - Nancy Klimas, M.D., Miami Herald, March 24, 2009

 

[ukxmrv]

Having visited patients with CFS and ME who have been committed to UK Psychiatric hospitals I have yet to meet one who came out better than they went in. In all the cases I have been involved with and followed patients have been harmed by either the drugs, the treatment regime or been bullied/attacked by other patients there.

Anyone who thinks that their local locked psychiatric ward would be a good place for a PWME should visit there and report back to us after that visit.

I agree with Nancy Klimas about the possible PTSD. A PWME who has their door knocked down by police, is forcibly removed from their home and then forced against their will into a tiny room in a hospital that refuses to accept that they have a physical illness (even something like POTS) could be badly traumatised from that experience both mentally and physically.

 

[alex3619]

Having visited patients with CFS and ME who have been committed to UK Psychiatric hospitals I have yet to meet one who came out better than they went in. In all the cases I have been involved with and followed patients have been harmed by either the drugs, the treatment regime or been bullied/attacked by other patients there.

Anyone who thinks that their local locked psychiatric ward would be a good place for a PWME should visit there and report back to us after that visit.

I agree with Nancy Klimas about the possible PTSD. A PWME who has their door knocked down by police, is forcibly removed from their home and then forced against their will into a tiny room in a hospital that refuses to accept that they have a physical illness (even something like POTS) could be badly traumatised from that experience both mentally and physically.

I know of cases where this kind of treatment was threatened as a means of coersion in the UK, and no I will not mention names. That is enough to induce fear and perhaps trauma.

 

[Bob]

I've edited some of my recent posts, after re-reading, because I realised that they were a little demeaning to both myself and other patients.
I found myself needlessly defending patients, saying that, of course, CFS patients do try to improve their lives, the best they can, when they can.
But as this is so blindingly obvious, it seemed demeaning to even have to say it, and I thought I should delete it.
I also found myself pointing out that, just because we are discussing Simon Wessely on a thread with 'Wessely' in the title, doesn't mean that anyone is taking an unhealthy interest in Simon Wessely or causing harm to their health. Again, this is obvious, and shouldn't need pointing out.

I think the posts, that I was responding to, say more about the poster than any CFS patients.

 

[Valentijn]

Blaming everything on psychiatry is just 'bunker thinking'. There hasn't been research because there has been no researcher with a valid project to fund - and that's not because of psychiatric propaganda - it's beause there's been no conception of how to pursue the problems that M.E/CFS presents. There is an issue in th UK as to why no adequate epidemiology has been undertaken, but even that has its roots in the difficulties of definition.

Simon Wessely and other psychological proponents very strongly discourage investigation of patients on an individual basis (see quotes below), and it's rather inevitable that such a message will be translated by many doctors and most politicians to mean that the perpetuation of symptoms is not biological (aside from deconditioning) and that biological research is futile.

In the process of touting their BPS theories, they use rather derisive descriptions of any competing theories held by misguided patients and radical internet forum members . Furthermore, many papers advancing a BPS view spend more time tearing down competing theories than supporting their own theories. Anyone reading some of these papers will reach the conclusion obviously intended by the authors - although etiology is uncertain and probably includes viral infection, people with ME/CFS are no longer physiologically sick by the time they go to get their CBT.

One guide written by a council of "experts" in the Netherlands for a government body went a bit further, saying it would be pointless to waste money looking for a cause. Wessely does not dare to be so blatant, at least not that I have seen, but much of his work carries the same message.

There are numerous cautionary tales of individuals who have suffered from delayed or missed diagnoses of serious illnesses due to under investigating of fatigue. Yet if the search for unlikely 'zebra' causes of fatigue goes on too long, the risk of iatrogenic harm increases and the opportunity for early focused treatment of CFS may be lost.
Harvey S, Wessely S. Tired all the Time: Can new Research on Fatigue Help Clinicians? Br J Gen Practice 2009: 59: 93-100

This paper proposes that well-intentioned actions by medical practitioners can exacerbate or maintain medically unexplained symptoms (MUS)—i.e. physical symptoms that are disproportionate to identifiable physical disease. The term is now used in preference to ‘somatization’.
Page L, Wessely S. Medically unexplained symptoms: exacerbating factors in the doctor-patient encounter. J Royal Soc Medicine 2003: 96: 223-227

In individuals with fatigue lasting more than 6 months, physical examination, basic laboratory tests (full blood count, ESR, electrolytes, liver and thyroid function) and a good psychosocial history and examination will usually establish the diagnosis. Unless physical or laboratory examination reveals significant abnormalities, the yield from further, sophisticated tests is low and there is a risk of iatrogenic injury.
Wessely S, Chronic fatigue syndrome. Psychiatry 2003: 2; 20-23

In patients with a long history of severely impaired functioning, or who have proven consistently resistant to treatment, management is essentially supportive with infrequent but regular contact. The aim with this approach is to at least reduce further deterioration and limit unnecessary or repeated investigations and treatments.
Reid S, Wessely S. Chronic fatigue syndrome. Conn’s Current Therapy (ed Rakel, Bope). Saunders, 2002, 110-113

Special investigations should be conducted only if specifically indicated as they may paradoxically lead to an increase in concern about the possibility of abnormal results, as well as having the potential to result in iatrogenic harm themselves.
Reid S, Wessely S. Chronic fatigue syndrome. Conn’s Current Therapy (ed Rakel, Bope). Saunders, 2002, 110-113

The need to rule out an organic disorder must also be balanced with the potential adverse consequences of continued investigation-seeking.
Reid S, Wessely S. Chronic fatigue syndrome. Conn’s Current Therapy (ed Rakel, Bope). Saunders, 2002, 110-113

Several other therapies have gained preliminary support in clinical trials including magnesium injections, immunoglobulin infusions and fish oil. None of these agents have been convincingly demonstrated to be efficacious. Such treatments may be expensive and even harmful and distract both patient and doctor from efforts at rehabilitation, which at present appear more likely to be effective in the longer term.
Sharpe M, Chalder T, Palmer I, Wessely S. Assessment and management of chronic fatigue syndrome. General Hospital Psychiatry 1997:19:185-199

In our experience either agreement among all those treating the patient or suspension of competing models of treatment is necessary.
Sharpe M, Chalder T, Palmer I, Wessely S. Assessment and management of chronic fatigue syndrome. General Hospital Psychiatry 1997:19:185-199

The role of antidepressants remains uncertain but may be tried on a pragmatic basis. Other medications should be avoided.
Sharpe M, Chalder T, Palmer I, Wessely S. Assessment and management of chronic fatigue syndrome. General Hospital Psychiatry 1997:19:185-199

Not only is physical investigation and treatment of patients pointless (beyond the basic tests ruling out organic/non-CFS disease), it might cause us harm! It might interfere with our ability to be brainwashed back into good health! We might somatize even more than we do already! We might get inappropriately concerned about the abnormal results that frequently turn up! Magnesium and fish oil may bankrupt and distract us!

They make it sound like anyone even considering a research trial involving something other than CBT, GET, and/or antidepressants seriously risks turning us into irreversibly somatizing corpses. And I have little doubt that that affects the willingness of various institutions to engage in biological studies of ME/CFS patients.

 

[Holmsey]

Hmm, I'd be very interested to see this 'clear evidence', re CFS/ME, if you have it to hand.

I don't, but I've absolutely no doubt I could find them. But lets look at it another way.
If you are in a position to argue that none of your symptoms are effected by physical stress then you would have no reason to decline GET, at worst it's just going to take up your time.
In a similar way, if you argue that mental or emotional stress doesn't exacerbate your symptoms then you are unlikely to ever win a clinical argument around congitive difficulties associated with your illness.
And finally, if you argue that the stress of infection does not in any way change the symptomology of your condition then you add weight to the argument that it has neither a viral nor immunological component.

In all walks of life from engineering to programming we test systems by stessing them, how they respond to those stesses identifies their weeknesses.

The PACE and FINE Trials demonstrate that CBT is not a helpful intervention for reducing objectively-measured disability, and for improving other objective outcomes, such as employment hours and benefits claims.
For the self-reported (subjective) primary outcomes (which were subject to bias), an average of 13% of PACE Trial participants reached the threshold for a minimal improvement, after treatment with CBT/GET.
16% of participants said that they found CBT/GET 'helpful'.
So I think we should be aware that CBT has very limited benefits, but a minority of CFS patients might find it helpful.

I think when we're answering each others mails we should avoid disagreeing simply because we've disagreed in the past. In this instance I clearly pointed to 'the one benefit off' in order to make a specific point which was unrelated to CBT itself, I did not make an argument for CBT.

And we have to be careful what we mean by "CBT", and what type of CBT is being offered to ME/CFS patients. Do we mean the type of CBT that is designed to address 'fear of activity' and the 'maladaptive illness-beliefs' that are alleged to cause CFS, or do we mean the type of CBT designed to address other issues, such as stress or depression? The former type of CBT has now been discredited by the PACE and FINE Trials.

[/quote]
Yes, this was also raised in an earlier mail, in answering that I made the same point, my comment regarding CFS was by way of demonstrating patient responsibility, the notion that we simply can't say, 'just fix me, I don't like you, don't trust you but it's your responsibility to fix me whether I co-operate or not'.

Cheers,

 

[alex3619]

Hi Holmsey, I agree that the physical stressors you list are all going to exacerbate ME. However, and this is important, none of them are the kinds of stressors that CBT will help.

The logical flaw here is the same one that I see in many BPS papers on ME and CFS. The meaning of the word vascillates with context, and its presumed that if something is right with one meaning of the word it is right with the others, or all of them. This is not the case. Reason/logic is bound to the meaning of the word, not the word itself.

Stress is a nebulous word. Psychobabble is full of nebulous words that mean all sorts of things in different contexts, even in the same papers sometimes.

Stress in a psychological sense is really neurological stressors in combination with hormonal stressors. We are stressed when the normone demands are too high and neurological activation is too intense. Treatments like CBT and mindfulness etc. can help with that, by calming the physiological and neurological states. They can also assist by reducing the brain response to stressors, though this is much more difficult and probably more true of mindfulness than CBT so far as I am aware.

Cognitive demand is not affected in us by these treatments to the best of our knowledge. Its simply not been tested. They focus on fatigue typically. It will also not help us with infection, thats driven primarily by immunological issues. Similarly it will not help us with physical exercise. It might help us reduce the stressors from the psychological response to exercise, cognitive demand or immunological challenge, but that is likely to be a seriously minor component - its only in their unproven hypotheses that this component has any substantial impact.

So I reject your argument, Holmsey.

In psychobabble they make true statements in one interpretation of the text, that are palpably false in another. They vascillate between meanings. For this reason they love to use deliberately ambiguous words, or to use words that have very special meanings that others might not realize are different from the usual meaning. "Fatigue", "functional', "normal", "recovery", "evidence-based", even "stress" ... these are just a few. I hope to make a comprehensive list with examples over time. Maybe later this year I will blog on this, though it is more likely to be in a year or two, this year is looking too full as it is, and this will be a lot of work.

They also revel in these ambiguous word uses. Why do you think they keep coming up with new innocuous sounding names for psychosomatic disease and psychogenic causation? Somatization? Functional Somatic disorders, or Somatic Symptom Disorder? These don't mean what you would expect if you were a member of the general public who had not researched it. It implicitly involves misleading patients. Papers have been written about how wonderful it is to do this, its obviously in the best interest of patients.

Bye, Alex

 

[Holmsey]

Whether the treatment(s) be the pointless use of CBT or the potentially dangerous GET or psychiatric drugs, SW is as capable of imposing dangerous iatrogenic treatments as any other shrink, it’s just that these treatments stem from his research (along with his cohorts).

You are as you say entitled to pursue you beleifs in any direction you choose, whether or not that direction proves usefull to you individually or the advocacy around our illness in general can only be judged against your intended goals.
With regards to SW and treatments. SW didn't adopt those treatments, the NHS did, politicians did. SW does not dispense those treatments alone, clinicians do, clinicians which we must hope in the main possess more medical knowledge than most of us. The issue is that we've lost / are loosing the rational argument around our illness, or if you like not us, but the biomechanical lobby within the scientific community. That the Psyc lobby's argument for whatever reason has been accepted over the alternate one is only the Psyc's fault if you can prove dishonesty on their part, i.e. that they do not profoundly beleive their own rhetoric and I see continuing evidence that they are entirely convinced.

I’ve done all three psychiatry suggestions, the drugs and the GET damaged me, I have no idea whether the CBT did anything, I don’t know how I could measure that. I do know the drugs are disgusting, their side effects, very serious withdrawal issues and the look on every NHS tosspot Doctor’s face when they learned I was on a low dose antidepressant (which I might add was being administered on the suggestion that it would aid sleep pattern and pain relief) is something only I can know and live with. As for the GET, the relapse lasted months and I wondered if I would get through it.

There isn't a cornucopia of treatment options out there, and the Psyc's aren't the only ones touting low level anti-depressant drugs to assist with pain and sleep, I was finally convinced to go down this route by Dr. Sarah Myhill's clinic, I'd refused my own GP even though his motives were based on exactly the same understanding, that it was not for depression but to aid sleep and pain symtoms. You indicate that withdrawal is a bitch, they're trialling Rituximab for our illness, that's one serious drug.

It is his problem if he feels misunderstood or is bothered by imaginary death threats or believes he is mis-quoted. I do not believe that keeping quiet and engaging with psychiatry is the way forward – it has not benefited us thus far and there is no glimmer on the horizon that it ever can help us. History shows that psychiatry is littered with casualties – millions of them.

I'm not sure we've ever kept quiet or engaged with psychiatry so I'm unable to follow your argument that you have evidence this hasn't worked. As to the assertion that it's SW's problem re. death threats and miss-quotes, my only comment on that is that the positioin of 'society has a duty of care towards me' is irreconcilable with 'but I don't have to conform to societal norms because somehow I'm a special case'.

Defending SW in any shape or form should be left to SW and his lawyer.

By this argument then, we are all on our own or do you beleive we should have societal rights that SW does not. All law all protocol is the product of how we collectively want to be treated, is it not?