Interesting letter and response in the UK's Telegraph re CBT for CFS

[JohntheJack]

Yes - I wouldn't claim that all sufferers have a psychological factor contributing to the development of their illness - just that there seem to be sound scientific reasons why it may happen in some cases, as a result of chronic HPA activation/chronically-raised cortisol levels, due to stress, which the body cannot sustain indefinitely.

But we ALL need physiological treatment, IMO, and must NOT be encouraged to exert ourselves.

We'll have to agree to disagree again.

My position is as follows.

ME is a physical illness with physical cause and physical symptoms (including cognitive). Any illness which includes a psychological element may be related but is by definition not ME.
To broaden the definition of ME to include illnesses with a psychological element is to muddy the waters, spread confusion and set back the cause of people with ME as properly defined.

I understand others see things differently.

 

[Esther12]

Thanks, Esther.

I was provided with a PDF of this today which I think is interesting.
http://medicine.stonybrookmedicine.edu/psychiatry/news/friedberg_commentary

Thanks. I see Dolphin has just started one on the press release:

http://forums.phoenixrising.me/inde...me-may-present-less-than-meets-the-eye.31868/

Good to have a researcher draw attention to the issue of 'recovery' being inappropriately defined in Pace, but I thought the Freidberg piece really missed some key points with the way PACE defined recovery. White et al lowering the threshold for recovery from an SF36 PF score of 85 (in their protocol) to one of just 60 (lower than the entry criteria of 65 for the trial) with the inaccurate justification that about half of the working age population have a score under 85 seems worth mentioning, especially as the Chalder Fatigue scale threshold for recovery was also altered so as to allow patients to be classed as recovered even if their fatigue score had worsened. In a non-blinded trial. (I'm starting to rant).

I was left wondering whether peer review had pushed for the removal of key criticisms and push for a focus on clinical implications? It seems like a bit of a strange article as it is.

 

[MeSci]

We'll have to agree to disagree again.

My position is as follows.

ME is a physical illness with physical cause and physical symptoms (including cognitive). Any illness which includes a psychological element may be related but is by definition not ME.
To broaden the definition of ME to include illnesses with a psychological element is to muddy the waters, spread confusion and set back the cause of people with ME as properly defined.

I understand others see things differently.

I'm not saying that psychology is in any way involved once ME has developed.

Here is one of a number of papers that finds psychological stress to be a factor in the triggering of ME development.

My theory as to how this can occur is based on the fact that stress (or over-exertion, which may co-occur with, or be a consequence of, stress) makes biological barriers more permeable (e.g. gut mucosa and blood-brain barrier). This increased permeability can facilitate the entry of other triggers, e.g. viruses or toxins, into parts of the body systems that they cannot usually access.

That may be why many of us have signs of active or prior infection but have been unable to clear the pathogens.

Disagreement is fine! I knew this could potentially open a can of worms, as it usually provokes strong responses.

I am a scientist and do not in any way support psychiatric treatment for ME, but cannot deny the scientific evidence for partial causation in some - not all - cases.

I'm not talking about a psychological element in ME other than as part of causation. I would argue the same about other, related illnesses such as rheumatoid arthritis. The mechanisms may involve autoimmunity.

Why not join in the discussions about these theories - they're fascinating!

 

[JohntheJack]

Thanks. I see Dolphin has just started one on the press release:

http://forums.phoenixrising.me/inde...me-may-present-less-than-meets-the-eye.31868/

Good to have a researcher draw attention to the issue of 'recovery' being inappropriately defined in Pace, but I thought the Freidberg piece really missed some key points with the way PACE defined recovery. White et al lowering the threshold for recovery from an SF36 PF score of 85 (in their protocol) to one of just 60 (lower than the entry criteria of 65 for the trial) with the inaccurate justification that about half of the working age population have a score under 85 seems worth mentioning, especially as the Chalder Fatigue scale threshold for recovery was also altered so as to allow patients to be classed as recovered even if their fatigue score had worsened. In a non-blinded trial. (I'm starting to rant).

I was left wondering whether peer review had pushed for the removal of key criticisms and push for a focus on clinical implications? It seems like a bit of a strange article as it is.

Possibly. Did you look at the pdf?

I think they are being measured, but the conclusion is very strong.

It's not really a full critique of PACE, but it does rather burst its bubble.

 

[JohntheJack]

I'm not saying that psychology is in any way involved once ME has developed.

Here is one of a number of papers that finds psychological stress to be a factor in the triggering of ME development.

My theory as to how this can occur is based on the fact that stress (or over-exertion, which may co-occur with, or be a consequence of, stress) makes biological barriers more permeable (e.g. gut mucosa and blood-brain barrier). This increased permeability can facilitate the entry of other triggers, e.g. viruses or toxins, into parts of the body systems that they cannot usually access.

That may be why many of us have signs of active or prior infection but have been unable to clear the pathogens.

Disagreement is fine! I knew this could potentially open a can of worms, as it usually provokes strong responses.

I am a scientist and do not in any way support psychiatric treatment for ME, but cannot deny the scientific evidence for partial causation in some - not all - cases.

I'm not talking about a psychological element in ME other than as part of causation. I would argue the same about other, related illnesses such as rheumatoid arthritis. The mechanisms may involve autoimmunity.

Why not join in the discussions about these theories - they're fascinating!

My illness was caused by over-exertion when infected so to an extent I agree with you. (In fact I have had several illnesses, one after another without recovering fully in between. Each time it was virus + activity = ME.)

I would disagree with your characterization of what you describe as 'psychological'. I would say that physical stress is what causes the viral infection to jump the biological barrier. But I would accept that physical stress can be caused in some cases (or exacerbated) by psychological stress. If someone is under psychological stress then that can tire the body and affect its physical response. But it's the tiredness created by the psychological stress which matters, not the underlying psychological stress.

So perhaps we're not that far apart.

 

[Esther12]

Possibly. Did you look at the pdf?

I think they are being measured, but the conclusion is very strong.

It's not really a full critique of PACE, but it does rather burst its bubble.

Is the full thing only one page? I seem to remember looking for the pdf, and then finding it was really short - I think that was this paper, but now cannot find my copy. I should probably dig it out before commenting more.

 

[JohntheJack]

Is the full thing only one page? I seem to remember looking for the pdf, and then finding it was really short - I think that was this paper, but now cannot find my copy. I should probably dig it out before commenting more.

Yes, it was very short. I noticed that as well.

 

[A.B.]

I'm not saying that psychology is in any way involved once ME has developed.

Here is one of a number of papers that finds psychological stress to be a factor in the triggering of ME development.

There is no proven causal relationship between psychological stress and development of illness. There might be a correlation, but we have no idea if it indicates a causal relationship. People with worse health might experience greater psychological stress as consequence of subtle impairment. They might even be already sick, and in initial stages of illness without knowing it. We don't even know if they are accurately reporting pre-illness psychological stress. One would assume that being ill changes one's perception of past events, and makes one more ikely to focus on negative aspects.

I find these down to earth explanations make more sense than explanations involving assumed mind-body effects.

Remember that there is a very good correlation between depression and heart disease, and it was believed by some that depression was causing heart disease. Further studies then showed that successfully treating depression does not prevent or cure heart disease. It seems likely they both have the same cause.