Rethinking the treatment of CFS — a reanalysis and evaluation of findings from a recent major trial of GET and CBT (2018) Wilshire et al.

Liked by Michael Sharpe I see. They're pretty tight, those BPS folks.

Still, lots of FND patients are genuinely grateful to Stone for at least acknowledging the existence of their disease and treating them with compassion. His clinic offers some treatment (CBT and physio I think), and many seem to appreciate that. I think patients also appreciate being given a name for their symptoms, FND. It sounds a lot better to outsiders than CFS, doesn't it? And it sure beats telling friends and family that your symptoms are just unexplained.

(Of course FND is one of those code words that means "psychological" to doctors, but not to patients. We know that. But to many, FND sounds like a real and serious disease, whereas CFS and ME definitely do not.)

The other reason why FND patients are more accepting of all this BPS stuff is that in FND, the psychological nature of the models is usually carefully hidden from them (e.g. "you don't have a problem with the brain hardware, its more a problem with the software", that sort of thing). Even when psychological factors are mentioned, "past trauma" is usually emphasised over psychological weakness (this is a bit of a lie, current BPS models emphasise psychological weakness not past trauma). Many patients seem to get comfort out of being able to blame some awful person from their past.

FND patients are also a smaller, more disparate bunch, so are less well equipped to question what the good doctor says.

But concealing from your patients the true nature of your explanation - even if you believe its for their own good - is that ethical?
 
Woolie said:
Liked by Michael Sharpe I see. They're pretty tight, those BPS folks.

Still, lots of FND patients are genuinely grateful to Stone for at least acknowledging the existence of their disease and treating them with compassion. His clinic offers some treatment (CBT and physio I think), and many seem to appreciate that. I think patients also appreciate being given a name for their symptoms, FND. It sounds a lot better to outsiders than CFS, doesn't it? And it sure beats telling friends and family that your symptoms are just unexplained.

(Of course FND is one of those code words that means "psychological" to doctors, but not to patients. We know that. But to many, FND sounds like a real and serious disease, whereas CFS and ME definitely do not.)

The other reason why FND patients are more accepting of all this BPS stuff is that in FND, the psychological nature of the models is usually carefully hidden from them (e.g. "you don't have a problem with the brain hardware, its more a problem with the software", that sort of thing). Even when psychological factors are mentioned, "past trauma" is usually emphasised over psychological weakness (this is a bit of a lie, current BPS models emphasise psychological weakness not past trauma). Many patients seem to get comfort out of being able to blame some awful person from their past.

FND patients are also a smaller, more disparate bunch, so are less well equipped to question what the good doctor says.

But concealing from your patients the true nature of your explanation - even if you believe its for their own good - is that ethical?
Click to expand...

It's sickening, really. If they have a neurological disorder, they could be going without treatment, which is likely to make them worse.
 
Oh dear, looking at Stone's website I find this:
Fatigue
Tiredness is a very common symptom in patients with functional neurological symptoms.

Often despite many more obvious symptoms, people say that it is the tiredness and fatigue that really holds them back day to day.

Tiredness in this situation can also be thought of as another symptom related to a problem with nervous system functioning.

When tiredness like this occurs
• with no other neurological symptoms
• for more than 6 months
• not due to a detectable underlying medical or neurological condition
then it is called Chronic Fatigue Syndrome / M.E. (CFS/ME)
Click to expand...
http://www.neurosymptoms.org/fatigue/4533053151

He then goes on to recommend NHS Choices (which recommends CBT/GET), a book by Sharpe, and NHS clinics, and says there is good evidence for the treatments.

If that's the quality of his work, I fear for his patients.
 
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Trish said:
Oh dear, looking at Stone's website I find this:

http://www.neurosymptoms.org/fatigue/4533053151

He then goes on to recommend NHS Choices (which recommends CBT/GET, a book by Sharpe, and NHS clinics, and says there is good evidence for the treatments.

If that's the quality of his work, I fear for his patients.
Click to expand...

This is so stupid. ME *is* a medical AND a neurological condition. Hand-wavey fatigue alone is NOT ME.
 
adambeyoncelowe said:
It's sickening, really. If they have a neurological disorder, they could be going without treatment, which is likely to make them worse.
Click to expand...
Yes, I definitely think there are huge costs to patients with this whole BPS enterprise. Long-term costs associated with incorrect hypotheses that are hard to disprove. But I wanted to point out that actual real patients are actually genuinely grateful to Stone, I've spoken with some. That's such a different situation to MECFS - where there's pretty universal contempt for the major BPS figures. I thought it was interesting to explore why.

Some of it is because the BPS figures in this area have been more wily in presenting their ideas to patients. So there's a fair bit of deceit going on. But there's probably some actual advantages to having a name for your disease which doesn't sound totally bunk to outsiders (I'm assuming that the alternatives would be no label, MUS or conversion disorder).
 
Woolie said:
Yes, I definitely think there are huge costs to patients with this whole BPS enterprise. Long-term costs associated with incorrect hypotheses that are hard to disprove. But I wanted to point out that actual real patients are actually genuinely grateful to Stone, I've spoken with some. That's such a different situation to MECFS - where there's pretty universal contempt for the major BPS figures. I thought it was interesting to explore why.

Some of it is because the BPS figures in this area have been more wily in presenting their ideas to patients. So there's a fair bit of deceit going on. But there's probably some actual advantages to having a name for your disease which doesn't sound totally bunk to outsiders (I'm assuming that the alternatives would be no label, MUS or conversion disorder).
Click to expand...

You're probably right. And FND is such a vague term it means everything to everyone. The patients do seem caught up in the propaganda. I wonder if, once there's a biomarker or test for ME, that'll change?
 
Trish said:
Oh dear, looking at Stone's website I find this:

http://www.neurosymptoms.org/fatigue/4533053151

He then goes on to recommend NHS Choices (which recommends CBT/GET, a book by Sharpe, and NHS clinics, and says there is good evidence for the treatments.

If that's the quality of his work, I fear for his patients.
Click to expand...

Ho hum... they are coming at us from all angles. By giving as many people CFS/ME diagnoses as possible so they can have lots of people saying - "Oh yes I had ME and now I'm running marathons again". What a ploy!

@dave30th I'm sure you've been alerted to this, and I'm sure you also have far too many leads to follow already, but I've tagged you anyway.
 
Woolie said:
Yes, I definitely think there are huge costs to patients with this whole BPS enterprise. Long-term costs associated with incorrect hypotheses that are hard to disprove. But I wanted to point out that actual real patients are actually genuinely grateful to Stone, I've spoken with some. That's such a different situation to MECFS - where there's pretty universal contempt for the major BPS figures. I thought it was interesting to explore why.

Some of it is because the BPS figures in this area have been more wily in presenting their ideas to patients. So there's a fair bit of deceit going on. But there's probably some actual advantages to having a name for your disease which doesn't sound totally bunk to outsiders (I'm assuming that the alternatives would be no label, MUS or conversion disorder).
Click to expand...

Sorry, long (and a bit personal) post.

In the early days, when I was still in limbo (am I out now? Wondering), I was told by my GP that my neurological symptoms were functional, which was not really a firm diagnosis but a track which I followed up to Stone and al. (nearly nothing on the subject in French).

I had at this point been told by a psychiatrist that I had no psychiatric disorder and was being brought back to a psychosomatic etiology by every other doctors in town. It really was confusing.

Though a psychosomatic diagnosis made little sense to me (I had no psychiatric symptoms, no past history of trauma, no recent emotional shock, nice family life, just a relatively stressful but enjoyed job), the thing that mattered most was to get better, and if my symptoms were psychosomatic, well be it, I was ready to have a psychotherapy and even psychotropic drugs (but less keen on these).

Here, the question of the symptoms being psychosomatic or not is not a side question, as many psychosomatic proponents keep repeating. It is central to the way one’s going to handle the problem.

What I read in Stone and his mates' articles was muddy. They were saying at the same time that in a sense FND was not a psychogenic disorder, but that for some people it was, that psychotherapy was a great tool, but that it was not for everyone, that attention played a central role and so on so on… Their take on the word "functional" is particularly worrying, they are saying at the same time that it does not imply a psychiatric etiology, and using it as a synonym of psychogenic. That made me defiant. Their texts were not making things clearer, but I was made more and more puzzled. Especially I was getting the impression that they were not telling the whole truth, for the patients’ good. I can’t figure out clearly even now, what their theory is. It is not clear at all, often not very coherent, it’s mainly hypothesis presented as facts and I’m not teaching you anything new here, just a simple look at Stone's CFS page on his website gives a hint at his level of scientific requirement... I then read a book, “overcoming functional neurological symptoms” and it was so unbelievingly patronizing and full of simplistic bullshit that I gave less and less credit to psychosomatic explanations.

But contrarily to Wessely, Sharpe and their likes, Stone (and Mark Edwards to some extent) seem (I may be wrong) to have a real empathy towards their patients. They’re not dismissive and they think they’re truly trying to help. They often engage with patients' concerns and try to answer questions, which is something "CFS specialists" never do, on the contrary. That may explain why patients trust them.

I also think that some of the movement disorders they describe are a bit like stutter. Some people who can’t walk are able to run, like a stutterer unable to talk can sing. And like for stammer, rehab and stress management can be of real help.

But if rehab and psychotherapies may have helped some of their patients, the problem arises when psychogenic theories are forced on all patients without any evidence that emotional distress is the cause of their problems.

And Stone is not helpful at all in this because:

He’s not trying to find who may be helped by his pet treatments and who may not.

He’s not at all trying to look at any alternative theory, he never considers any biomedical explanation for these disorders.

That’s where he’s really letting down his patients.
 
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Cheshire said:
Sorry, long (and a bit personal) post.

In the early days, when I was still in limbo (am I out now? Wondering), I was told by my GP that my neurological symptoms were functional, which was not really a firm diagnosis but a track which I followed up to Stone and al. (nearly nothing on the subject in French).

I had at this point been told by a psychiatrist that I had no psychiatric disorder and was being brought back to a psychosomatic etiology by every other doctors in town. It really was confusing.

Though a psychosomatic diagnosis made little sense to me (I had no psychiatric symptoms, no past history of trauma, no recent emotional shock, nice family life, just a relatively stressful but enjoyed job), the thing that mattered most was to get better, and if my symptoms were psychosomatic, well be it, I was ready to have a psychotherapy and even psychotropic drugs (but less keen on these).

Here, the question of the symptoms being psychosomatic or not is not a side question, as many psychosomatic proponents keep repeating. It is central to the way one’s going to handle the problem.

What I read in Stone and his mates' articles was muddy. They were saying at the same time that in a sense FND was not a psychogenic disorder, but that for some people it was, that psychotherapy was a great tool, but that it was not for everyone, that attention played a central role and so on so on… Their take on the word "functional" is particularly worrying, they are saying at the same time that it does not imply a psychiatric etiology, and using it as a synonym of psychogenic. That made me defiant. Their texts were not making things clearer, but I was made more and more puzzled. Especially I was getting the impression that they were not telling the whole truth, for the patients’ good. I can’t figure out clearly even now, what their theory is. It is not clear at all, often not very coherent, it’s mainly hypothesis presented as facts and I’m not teaching you anything new here, just a simple look at Stone's CFS page on his website gives a hint at his level of scientific requirement... I then read a book, “overcoming functional neurological symptoms” and it was so unbelievingly patronizing and full of simplistic bullshit that I gave less and less credit to psychosomatic explanations.

But contrarily to Wessely, Sharpe and their likes, Stone (and Mark Edwards to some extent) seem (I may be wrong) to have a real empathy towards their patients. They’re not dismissive and they think they’re truly trying to help. They often engage with patients' concerns and try to answer questions, which is something "CFS specialists" never do, on the contrary. That may explain why patients trust them.

I also think that some of the movement disorders they describe are a bit like stutter. Some people who can’t walk are able to run, like a stutterer unable to talk can sing. And like for stammer, rehab and stress management can be of real help.

But if rehab and psychotherapies may have helped some of their patients, the problem arises when psychogenic theories are forced on all patients without any evidence that emotional distress is the cause of their problems.

And Stone is not helpful at all in this because:

He’s not trying to find who may be helped by his pet treatments and who may not.

He’s not at all trying to look at any alternative theory, he never considers any biomedical explanation for these disorders.

That’s where he’s really letting down his patients.
Click to expand...

Nice. Thanks for that. It's very helpful.
 
Woolie said:
The other reason why FND patients are more accepting of all this BPS stuff is that in FND, the psychological nature of the models is usually carefully hidden from them (e.g. "you don't have a problem with the brain hardware, its more a problem with the software", that sort of thing).
Click to expand...

The hardware/software analogy is simply body/mind duality with a different name. This needs to be called out whenever invoked.
 
Just posting this while we are on the subject of the Functional stuff. This is from the "Benefits and work" newsletter (they write guides to claiming UK benefits)

"“I have been a member of B&W for 4 years now and can honestly say that I would have got nowhere without you. I have Functional Neurological Disorder ( new name for CFS), arthritis and sciatica. I have just been awarded 'ongoing' Enhanced rates for both elements of PIP. By following your advice on understanding and completing the forms, I am able to continue having use of motability car; without which I would have been housebound. I am truly grateful and at this moment quite emotional as months of distress and worry is over with again ( until of course the time comes round again for yet another reassessment). Joining B&W has to be one of the best things I have ever done.
Sincerest gratitude and best wishes to the Team.”
 
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