CBT/GET potentially harmful to ME/CFS patients

Dolphin

Senior Member
Messages
17,566
If you know that Peter White uses the term 'fatigue' differently to how you would, then it is absurd to interpret his writings as if he is using your definition, and not his.
It is not absurd. For a start, it is not at all clear that Peter White has dropped muscle pain from his vocabulary.

Secondly, he may not know or accept the symptoms that patients face and why they might stop exercising. So he may not see fatigue as encompassing all the other symptoms.

Thirdly, as most people in this thread agree, fatigue is not an adequate term to describe the symptoms people with M.E. feel when they over-exert themselves so whatever meaning he has in his head for fatigue doesn't mean that we can't challenge it (when he is describing the illness to other professionals) to say that it does not adequately describe what people experience. And why they may stop exercising.

Doing so will make sensible criticism of his ideas far harder.
You have shown little interest in criticising his ideas. When I see you criticising one of his papers, I might think you care about this issue.
 

Dolphin

Senior Member
Messages
17,566
As Ellen Goudsmit has pointed out e.g. http://freespace.virgin.net/david.axford/pridprej.htm , the message has gone out from some of those pushing GET and CBT based on GET that we are wimps scared of a little fatigue.

This is why it is important to challenge claims and wordings which do not get across the extent of the symptoms we feel when we over-exert.
 

Alice Band

PWME - ME by Ramsay
Messages
175
Location
UK
Maybe Esther would like to explain to us why she has this particular and prolonged interest in discussing GET?

That may help people here to understand one another a little better.

From my position I'm always interested in GET discussions because I have experienced a program.

Esther, maybe tell us a little about your self and why you would spend so much time on a thread on GET?
 
Messages
13,774
Who says it is the weakest interpretation? In fact, what do you mean?

The answer was in the post you quoted:

"If GET is criticised for claiming that patients only suffer fatigue and not muscle pain and cognitive difficulties, then anyone who knows that the term 'fatigue' being used is intended to include these difficulties will be able to rightly dismiss your complaints as (what would be more polite thing to put here? I really can't think of a better way to put it)."

When you're criticising someone's arguments, it's good practice to attack the interpretation of their case which is the most resilient to attack. If your criticism is based upon a particular interpretation of a word, when another interpretation would invalidate your point, it can be dismissed as just straw-manning your opposition. This is especially the case seeing as you've now acknowledged that Peter White is likely to be using 'fatigue' in a different sense to your own.

Do I have to repeat myself, I am saying the word (fatigue) they are using does not explain to many of the readers the symptoms people feel.

Right: They should be clearer. That was the point I made back on page one (really - go check if you want to see how far weve progressed since then).

That's a different criticism to the claim that saying GET may result in 'fatigue' is somehow the same as claim GET will not result in muscle pain, cognitive difficulties, etc.

It is not absurd. For a start, it is not at all clear that Peter White has dropped muscle pain from his vocabulary.

Secondly, he may not know or accept the symptoms that patients face and why they might stop exercising. So he may not see fatigue as encompassing all the other symptoms.

Thirdly, as most people in this thread agree, fatigue is not an adequate term to describe the symptoms people with M.E. feel when they over-exert themselves so whatever meaning he has in his head for fatigue doesn't mean that we can't challenge it (when he is describing the illness to other professionals) to say that it does not adequately describe what people experience. And why they may stop exercising.

1) No one's claiming he has.
2) He may not. No-ones claimed otherwise. Equally - he may.
3) You're free to challenge the use people make of the word 'fatigue'. You go for it if you want. But it's strange to act as if others are using your own definition of the word, even when you have good reason to believe they are not.

You have shown little interest in criticising his ideas. When I see you criticising one of his papers, I might think you care about this issue.

I don't think it's an interesting issue. I think it's important for people with CFS, but intellectually, it bores me senseless. The evidence and theories surrounding GET all seem deeply doubtful, murky and contradictory to me; and it seems to attract those happy to talk with misplaced certainty about complicated and uncertain matters.

Ive spoken repeatedly within this thread of the problems with GET and CBT, the way theyre promoted, and the way the medical community treats those with CFS. Ive probably reduced the amount Ive mentioned this as the thread has gone on because no-one disagrees with these points, so theres no reason to go on bringing them up.

Maybe Esther would like to explain to us why she has this particular and prolonged interest in discussing GET?

That may help people here to understand one another a little better.

From my position I'm always interested in GET discussions because I have experienced a program.

Esther, maybe tell us a little about your self and why you would spend so much time on a thread on GET?

I have little interest in talking about GET. But Ive not been on a CFS forum before, so maybe the first few posts and replies were interesting for getting the perspective of other patients and clarifying my own ideas. More recently, I find it difficult not to reply to criticisms of my posts.

For myself:

I tried sort-of GET for my first year of being ill (really though it was just pushing myself and trying not to act like I was too ill). Then I did a year of pushing myself when I needed to, but taking more time to rest too. Then I did two years of pretty good GET. None of it made me feel any better, although I was never able to really enter any prolonged period of increasing exertion levels without a worsening of symptoms.

Since then for about 4 years I've done more pacing and resting.

I went to a GET clinic five years back, and the people there seemed like morons. They couldn't answer any of my questions, and seemed to resent me for asking them. It's possible they were trying to follow a CBT script, but were just very poorly trained.

I think its possible GET and CBT could be useful, but are just very poorly applied to most patients. I dont know though. Currently Im not interested in giving them another go, but if further credible research is released which indicates they are likely to be of use, I might give them another go.

I think Ive already provided all of this information, and it shouldnt matter anyway - my posts are my posts, and its just basic courtesy to respond to them as they are. The string of maybe you dont have real M.E., maybe you should just do some exercise then, maybe youre bonkers type inferences were just tedious. Whatever my personal experiences, they should be of little significance to a topic like this a sample of one is rarely compelling evidence of anything.
 

Alice Band

PWME - ME by Ramsay
Messages
175
Location
UK
Thank you very much for your reply Esther and talking about your experience at the clinics.

I'm genuinely curious to know how GET could be applied better to any patients with genuine CFS or ME.

Like yourself my condition worsened.

Initially by experimenting to see where my levels were, then by trying to maintain a baseline and of course by increasing my activity. I went from being able to work a little bit sometimes, to being unable to bathe.

Even the simple physical exertion needed to go to the clinic led to a downturn in my health.

If one accepts that people with ME and CFS have post exertional symptoms, then I can't see how GET can be applied at all.

Obviously, there will be a subgroup of people at the clinics who have recovered from a viral or fatiguing illness and can now increase their activity so that's not the group I am thinking about.

Any ideas anyone?
 

flybro

Senior Member
Messages
706
Location
pluto
Nancy Klimas says

Nancy Klimas says
5 minutes of some activity, followed by 5 minutes of no activity,

so 5 on, 5 off, 5 on, 5 off,

So if you were bed bound doing nothing, un able to abide noise, or light, or unable to sit up,

perhaps a slight raised angle of 5 degress of the back of the bed for five minutes, may be raise the blinds a couple of millimetres, maybe turn a radio on very very low for a 5 minutes.

I am pretty sure her intention would be that before patients try to re-condition that they have been on the supplements she recomends, and would be having regular NK cell tests, and watching for viral lode.

Unfortunately, it does appear that in the UK CBT & GET seems to be run by individuals who are perhaps unaware of the immune/neuro/endocrine dysfunstion and needs of PWME/CFS.

Also in the UK the research funding has mainly gone to the psych lobby's, which means that PWME are sick of having treatments to 'heal their minds', or 'recondition their bodies', when they are not offred anything that offers them support for viral lode, POTS, inflamation. Or blood tests that will check for bio-markers and the physiologilcal state of the endocrine/neuro/immune/cardio/vascular and give the PWME and indicator of wellness.

It is hard to accept the psych lobby's findings because, the MRC has not been equal with bio-medical research funds.

When so much scitific data has been ignored, why are we getting the supplements that work, why can't the NHS of USA insurances prescribe these.

Whys is there no MRC research into the evidence of others biomedical research.

If both sides, the bio-medical and 'sports/psych mind-body' research had been equally funded, perhaps more patients would have been able to benefit from CBT & GET, becuase they would have been made well enough by medicine to progress from illness to wellness and then perhaps to progressivly fitter.

Just my 2 penneth.

I for one was infuriated by my CFS expert.
 

Dolphin

Senior Member
Messages
17,566
I don't think it's an interesting issue. I think it's important for people with CFS, but intellectually, it bores me senseless.
Lucky for you that can sit back and not feel any responsibility on the issue.

I'm grateful for the people who try to challenge him.

For anyone reading this thread, here are some of his views which influenced the final NICE Guidelines:

If you have sensitivies to chemicals, make sure to look at part (viii) including the references.

It's a message I sent to Co-Cure around 2 years ago.
--------

I previously highlighted some points made by the Association of
British Neurologists during the NICE process:

http://tinyurl.com/2mjgh2 i.e.
http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0708D&L=CO-CURE&P=R2119&I=-3

and highlighted that one can read further submissions at:

"Chronic fatigue syndrome / Myalgic encephalomyelitis: stakeholders
comments and GDG responses":
http://guidance.nice.org.uk/page.aspx?o=449805
[AOL: <a href="http://guidance.nice.org.uk/page.aspx?o=449805">Here</a>]


However this is a huge mass of information and going back and
comparing it to the original is a lot of work. So I imagine most
people will not do it.


So I thought I'd highlight some comments by St Bartholomew's Hospital
Chronic Fatigue Services. I have done this on a couple of UK lists
and people have been fascinated by what was said.


St Bartholomew's Hospital is often shortened to Barts - this is not a
derogatory abbreviation.


The Barts service is led by the psychiatrist, Prof. Peter White.
Peter White is a major person in the CFS world. He has done much work
in the US in recent years including with the CDC so I thought people
around the world might be interested in some of the points they made.


I have not put comments so people can judge the comments themselves.


Bye,


Tom

==========================

(i) On Disability aids and equipment:

[TK: A blue badge is a disabled parking badge to allow somebody park
in a disabled parking space]

Draft text:
6.3.6.8 For adults and children with moderate or severe symptoms,
provision of equipment and adaptations (for example, a wheelchair,
blue badge or stairlift) to allow individuals to improve their
independence and quality of life should be considered, if
appropriate and as part of an overall management plan.

SH St Bartholomew's Hospital Chronic Fatigue Services
69 FULL 183 6.3.6.8
"…equipment and adaptations (for
example, a wheelchair, blue badge or
stairlift)…"
We disagree with this recommendation.
Why should someone who is only
moderately disabled require any such
equipment? Where is the warning about
dependence being encouraged and
expectation of recovery being damaged
by the message that is given in this
intervention? We are in no doubt that it
is a powerful message for a therapist of
any sort to provide such aids. Our view
is that such aids should only be
considered by a multi-disciplinary
therapeutic team as a whole, and
usually in the context of providing a
temporary means for a patient to
ncrease their activity levels. An
example would be providing a wheelchair
for a bed-bound patient as part of
their active rehabilitation programme. In
our opinion, such aids should never be
seen as a permanent solution to
disability in this illness.


NICE:
We have recommended such
equipment only if appropriate, and
as part of an overall management
plan and as an aid to independence.
-----------

Another quote along these lines:
In reply to (Draft NICE text):
1.3.1.8 For adults and children with moderate or severe symptoms,
provision of equipment and adaptations (for example, a wheelchair,
blue badge or stairlift) to allow individuals to improve their
independence and quality of life should be considered, if
appropriate and as part of an overall management plan.

Barts wrote:
Equipment and aids may hinder
recovery as much as help it, and their
prescription needs to consider both
outcomes. We believe disability aids
can help a patient towards recovery if
their use encourages a widening and
increase in their own activities, on a
temporary basis, as a means of
supporting a rehabilitation
programme. They should rarely if
ever be used for patients with only
moderate disabilities.


=====================


(ii) On making information available on audio tape:

SH St Bartholomew's Hospital Chronic Fatigue Services
91 FULL 260 13

Why should anyone with concentration difficulties find it easier to
use audiovisual technology, which by your implication does not involve
reading, more than reading itself (from either a book or computer
screen)? Would it not be more effective to negotiate a simple graded
programme of reading to help such a patient improve their reading
ability, along with helping to improve their cognitive capacity
through improving sleep and mood? What might be effective advice is to
encourage the use of voice-activated software in someone who finds
typing using a keyboard physical tiring, and needs to meet a deadline
in their job or studies.


Noted and removed – we consider that the text on including cognitive
activities addresses these points.

================================

(iii) On Weight loss in CFS/ME

SH St Bartholomew's Hospital Chronic Fatigue Services
88 FULL 248 6.5.5.2

"Adults or children who experience
severe weight loss should be referred
to a dietitian for assessment, advice
and nutritional support, which in
extreme cases may include tube
feeding."
This is alarming and arguably negligent
advice, which we strongly condemn.
Any patient who experiences severe
weight loss should be referred for
appropriate assessment, not by a
dietician alone, but by an appropriate
specialist doctor (gastro-enterologist or
psychiatrist) so a diagnosis can be
made. We do not know of any reliable
or replicated evidence that severe
weight loss, in deed any weight loss at
all, is a part of CFS/ME. Whereas we
are aware of patients referred to our
service with a diagnostic label of
CFS/ME who on assessment have an
alternative diagnosis, most commonly
anorexia nervosa (sometimes
presenting atypically without a body
image disorder, which is well described
in the anorexia nervosa literature), but,
on occasion, malabsorption.

NICE
This recommendation has been
removed.

========================================

(iv) On Neuropathetic pain and Gabapentin:

Draft Text:
Gabapentin: The GDG noted that the wider survey was supportive of
gabapentin in severe CFS/ME sufferers. The GDG was uncertain why
this was the case. Because of its side effects, the GDG did not
think that it should be used for mild pain but there will be certain
individual cases when it might be considered despite a relatively
high side-effect profile. The GDG decided not to make a positive or
negative recommendation.

----------
SH St Bartholomew's Hospital Chronic Fatigue Services
87 FULL 233 1

The GDG noted the survey support of
the use of gabapentin in CFS/ME.
However this drug is licensed for
neuropathic pain. There is no evidence
that patients with CFS/ME have a
neuropathy and we would not
recommend the use of this drug,
particularly as one of its significant side
effects is sedation, without empirical
evidence for its support, which is
currently lacking. It would be surprising
if NICE gave guidance based on
anecdotal evidence, an inaccurate
indication, for a drug, which has
significant adverse effects.


NICE Response:
Noted and we have recommended
that people should be referred for
specialist pain management if
appropriate.

====================
(v) Bowel symptoms and CFS/ME:

Draft text:
6.4.5.5 Prescribing of gut anti-spasmodics (such as mebeverine,
alverine, and peppermint oil) should be considered for adults and
children with bowel symptoms, such as cramp or bloating.

SH St Bartholomew's Hospital Chronic Fatigue Services
85 FULL 229 6.4.5.5
"..gut anti-spasmodics.." are not
treatments of CFS/ME since bowel
symptoms are not part of CFS/ME. You
should make it explicit that this
treatment might be indicated for the
treatment of IBS, if present comorbidly.
Alternatively, and perhaps more wisely,
you could suggest that IBS, if present,
should be treated in the light of the best
available evidence, and refer readers to
appropriate guidance, which may or
may not include considering
antispasmodics as the treatment of
choice for "bloating", although we would
doubt it. You do mention IBS on page
233, line 12.

NICE:
We have revised this
recommendation and referred to the
NICE IBS guideline – currently in
development.

=====================
(vi) On Drug Intolerance and CFS/ME:


Draft text:
6.4.5.2 Adults and children with CFS/ME may experience greater
intolerance and more severe adverse/side effects from drug
treatment. Where appropriate, drug treatment used for symptom
control should therefore be initiated at a lower dose than in usual
clinical practice, and should be increased gradually.

SH St Bartholomew's Hospital Chronic FatigueServices
84 FULL 229 6.4.5.2
We are not aware of any reliable and
replicated evidence to support the
statement that patients with CFS/ME
are more intolerant or have more
severe adverse effects; and "more
intolerant" than whom? We do not
agree that drug treatment should be
initiated at lower dose than in usual
clinical practice. This possible myth is
repeated within the guideline at various
points, and is important since it may
make doctors more likely to prescribe
sub-therapeutic doses. If you are going
to keep this included, you should make
sure that the anecdotal level of
evidence for this is explicitly stated. We
would suggest changing to "..drug
treatment at lower doses may be
considered…."

=============================

(vii) On Recovery times:

Draft text:
6.3.6.16 When planning a programme of GET the healthcare
professional should:
• discuss with the patient ultimate goals with the patient that are
important and relevant to them. This may be, for example a 2 x 15
minutes daily brisk walk to the shop, a return to previous active
hobby such as cycling or gardening, or, if more severely affected,
sitting up in bed to eat a meal.
• recognise that it may take weeks, months, or even years to achieve
goals, and it is essential that the therapy
structure takes this pace of progress into account.

SH St Bartholomew's Hospital Chronic Fatigue Services
75 FULL 188 6.3.6.16

These goals should include recovery,
not just exercise and activity goals.
If it takes "years" to achieve goals, then
either the goals are wrong or the
therapy is wrong. What other treatment
in medicine would take years to work?
We suggest "or even years" is deleted.
If a therapy is not helping within a few
months, either the therapy or the
diagnosis or both should be reviewed
and changes considered. We suggest
that this advice is pertinent to all
treatment approaches, not just for GET.

NICE:
The statistics indicate that total
recovery is relatively rare and the
GDG felt that to include recovery as
a goal may lead to disappointment.
As the goals are patient derived
they may be long term. Interim
goals would be developed.

================================

(viii) on Multiple Chemical Sensitivity (MCS):

Draft text (this is in a section on severe CFS/ME):
"Family life may also be affected as people with severe CFS/ME are
often sensitive to sounds and smell. For example, the person may be
unable to tolerate light or cleaning products whilst they are often
unable to control their body temperature, thus impacting on the living
environment."
and
"..Those caring for an individual with severe CFS/ME professionally
need an understanding of the illness and the needs of the individual
to meet the challenges of, for example, cooking or cleaning for an
individual who is sensitive to the smell of food or of cleaning
materials or bathing an individual who finds touch painful. Therefore
proper training should be given about the condition with the
involvement of the patient for any particular problems."


SH St Bartholomew's Hospital Chronic Fatigue Services
92 FULL 261 3 +

A patient with increased sensitivity to the smell of various
chemicals may be suffering from multiple chemical sensitivity, but
you would be making a dubious assumption to state this is part of or
even characteristic of severely disabling CFS/ME. MCS is a
potentially remediable condition through a graded exposure programme
on the basis that the underlying pathophysiology is a conditioned
response. It should not be considered as a part of CFS/ME.

(See: Staudenmayer H, Binkley KE, Leznoff A, Phillips S. Idiopathic
environmental intolerance: Part 2: A causation analysis applying
Bradford Hill's criteria to the psychogenic theory. Toxicological
Reviews 2003;22:247-61.

Bornschein S, Hausteiner C, Zilker T, Forstl H. Van den Bergh O,
Devriese S, Winters W, Veulemans H, Nemery B, Eelen P, Van de
Woestijne KP. Acquiring symptoms in response to odors: a learning
perspective on multiple chemical sensitivity. Annals of the New York
Academy of Sciences 2001;933:278-90.

Otto T, Giardino ND. Pavlovian conditioning of emotional responses
to olfactory and contextual stimuli: a potential model for the
development and expression of chemical intolerance. Annals of the
New York Academy of Sciences 2001;933:291-309.)

NICE response:
This section has been removed.

====================================

(ix) Point about whether CFS/ME is an incurable chronic disease or not:

Draft text:
1.3.1.6 The objectives of the individualised programme are to:
• sustain or gradually extend, if possible, the person's physical,
emotional and cognitive capacity
• manage the physical and emotional impact of their symptoms.


SH St Bartholomew's Hospital Chronic Fatigue Services
103 NICE 18 1.3.1.6

The emphasis here would be
appropriate for someone suffering
from an incurable chronic disease,
which CFS/ME is most often not. The
aim of an individualised programme
should be to help the patient recover,
or, if this is not possible, to help the
patient improve their quality of life and
minimise disability. The expectation of
both the patient and the practitioner is
vitally important in determining
outcome, and these current aims are
too conservative, and inconsistent
with the best available evidence.

NICE Response:
The Guideline Development Group had
to balance a positive outlook with the
recognition that some people will not
recover.

=======================

(x) On liasing with employers:

Draft text:
• Healthcare professionals should be proactive in advising about
fitness for work and education, and recommend adjustments or
adaptations to work or studies to enable rehabilitation of adults and
children with CFS/ME. This includes liasing (with the person's
consent) with employers, education providers and support services e.g:
occupational health services


St Bartholomew's Hospital Chronic Fatigue Services
FULL 23 22 thru 27
Sometimes acting as an intermediary
between patient and employer may
encourage dependence rather than
fostering recovery via empowerment.
We therefore suggest adding the
word "may" on line 24 to read, "This
may include…"

==============================
 
Messages
13,774
Lucky for you that can sit back and not feel any responsibility on the issue.

I'm grateful for the people who try to challenge him.

I think this is a good example of the problems we've been having in this discussion.

What I write seems to have no bearing on what you read.

I wrote: "I don't think it's an interesting issue. I think it's important for people with CFS, but intellectually, it bores me senseless" and you took that to mean that I think I have no responsibility towards this issue. Even when in another reply to you I wrote:

I certainly think we all have a responsibility to challenge the false and exagerated claims made about CBT, GET and CFS. I'm grateful to those who put so much time and effort into doing so.

I don't think there's anything more I can do about this.
 

Dolphin

Senior Member
Messages
17,566
Esther12 said:
I certainly think we all have a responsibility to challenge the false and exagerated claims made about CBT, GET and CFS. I'm grateful to those who put so much time and effort into doing so.

I don't think there's anything more I can do about this.
It's not the same question. You haven't said he makes false and exagerated claims - you're refering to hypothetical claims that are not necessarily the claims he makes. The question is whether you are grateful to the people who challenge him and whether you feel any responsibility to challenge him.
 
Messages
5,238
Location
Sofa, UK
Hmmm, Esther I think you've lost the plot somewhat. That's not what my point was at all. You do tend to see what you want to a lot of the time. That's a bit like the psyche brigade do here too. Are you sure you're not one of them? The whole point is that ME/CFS is NOT fatigue. From your sarcastic tone it would appear that you consider yourself to be THE authority on all matters ME/CFS and that nobody elses opinion can be of any value. Wrong!

I also find it quite bizarre that any one suffering from ME/CFS can state that they've "forgotten what abnormalities they have"! Sadly I'm personally reminded of them every minute of every wretched day with this illness. I so wish I could forget about them.

I shalln't bother with reading your posts anymore as you have nothing of value to offer and I do wonder whether you would know genuine ME/CFS if it was staring you in the face.

Goodbye Esther.

This just seems to me like a really nasty, insulting and misguided post. The accusations of sarcastic tone, seeing what you want to, and considering oneself to be THE authority, all seem to me to apply to some other people's reactions on this thread, but not to Esther12 based on anything I've read.

And by the way, just because I'm trying to stand up for reasonable debate and reasonable behaviour here, doesn't mean I believe in CBT/GET. I don't. I hate it, and I want to campaign against it, OK? My interest here is in finding good quality, succinct, reasoned resources; arguments against it that I can use. I'm still looking for those.

I don't fully understand why the following quote of Esther's was moderated earlier, it seems to me it may have been misinterpreted as an ad hominem attack (grammatically, it isn't, in my view), so a bit harsh to moderate it, but probably technically correct I suppose; I'm going to have to be really careful to avoid slips like this though:

"If GET is criticised for claiming that patients only suffer fatigue and not muscle pain and cognitive difficulties, then anyone who knows that the term 'fatigue' being used is intended to include these difficulties will be able to rightly dismiss your complaints as ignorant ramblings."

But as for I Wanna be Well's post, what can be said in its defence re: the guidelines on personal attacks? It seems a horrible way to treat a fellow PWC.
 
Messages
13,774
It's not the same question. You haven't said he makes false and exagerated claims - you're refering to hypothetical claims that are not necessarily the claims he makes. The question is whether you are grateful to the people who challenge him and whether you feel any responsibility to challenge him.

No, it's not the same. It wasn't a question either.

I was replying to your belief that I'd said I felt I had no responsibility on this issue. A strange interpretation of my word either way, made especially amusing by the fact I'd quite clearly said the opposite eariler in this thread. You seem to have avoided responding to that.

I'm sure Peter White has made false and misleading claims, but I'm not familiar enough with his work to dismiss him outright as a fraud and quack. I'm not very good with names, but I have a vague sense that he tends to be more cautious than other members of the psychological lobby for CFS. This could just be a desire to make his own views seem more presentable and respectable or it could be if is genuinely aware of the uncertainty that surrounds CFS, or it could be I've just not read any of the worse pieces of his work.

Hmmm, Esther I think you've lost the plot somewhat. That's not what my point was at all. You do tend to see what you want to a lot of the time. That's a bit like the psyche brigade do here too. Are you sure you're not one of them? The whole point is that ME/CFS is NOT fatigue. From your sarcastic tone it would appear that you consider yourself to be THE authority on all matters ME/CFS and that nobody elses opinion can be of any value. Wrong!

I also find it quite bizarre that any one suffering from ME/CFS can state that they've "forgotten what abnormalities they have"! Sadly I'm personally reminded of them every minute of every wretched day with this illness. I so wish I could forget about them.

I shalln't bother with reading your posts anymore as you have nothing of value to offer and I do wonder whether you would know genuine ME/CFS if it was staring you in the face.

Goodbye Esther.

Lets think back.

For the first point, I was responding to your assertion that people needed to have evidence of a damaged mitochondria and other known abnormalities to be classed as having CFS, and that if I did not, I was misdiagnosed.

I can't remember if I have evidence of a damaged mitochondria or not, but I do know that whatever abnormalities were identified with me, they played no role in my diagnosis, other than excluding other potential causes. I don't know of a diagnosis criteria for CFS that does require evidence of mitochondria damage, and certainly wouldn't feel comfortable telling those without it that they have been misdiagnosed. That you should do so, and then go on to accuse me of acting like THE authority on CFS strikes me as rather amusing, and may explain my sarcastic tone. The fact that you keep insinuating that I'm some undercover psychologist out to spread dissent in the ranks makes it even more difficult to take you seriously.

Secondly, I was responding to your assertion that, because the fatigue associated with CFS is different to the mild fatigue it is normal for healthy people to occasionally feel, this must mean that the word 'fatigue' cannot be used to refer to CFS fatigue. I pointed out that the word 'fatigue' is already used to describe a very wide range of experiences.

This just seems to me like a really nasty, insulting and misguided post. The accusations of sarcastic tone, seeing what you want to, and considering oneself to be THE authority, all seem to me to apply to some other people's reactions on this thread, but not to Esther12 based on anything I've read.

And by the way, just because I'm trying to stand up for reasonable debate and reasonable behaviour here, doesn't mean I believe in CBT/GET. I don't. I hate it, and I want to campaign against it, OK? My interest here is in finding good quality, succinct, reasoned resources; arguments against it that I can use. I'm still looking for those.

I don't fully understand why the following quote of Esther's was moderated earlier, it seems to me it may have been misinterpreted as an ad hominem attack (grammatically, it isn't, in my view), so a bit harsh to moderate it, but probably technically correct I suppose; I'm going to have to be really careful to avoid slips like this though:

"If GET is criticised for claiming that patients only suffer fatigue and not muscle pain and cognitive difficulties, then anyone who knows that the term 'fatigue' being used is intended to include these difficulties will be able to rightly dismiss your complaints as ignorant ramblings."

But as for I Wanna be Well's post, what can be said in its defence re: the guidelines on personal attacks? It seems a horrible way to treat a fellow PWC.

Hi Mark.

I really don't mind the jabs, although I thought the moderation seemed a little one sided too.


ps: sorry for not responding to people's more contructive comments, but I'm only really sticking with this thread out of some peculiar compulsion. I think I've said my piece, and don't have the knowledge to add any more. I'm just responding to misinterpretations of what I have said.
 

Dolphin

Senior Member
Messages
17,566
I was replying to your belief that I'd said I felt I had no responsibility on this issue. A strange interpretation of my word either way, made especially amusing by the fact I'd quite clearly said the opposite eariler in this thread. You seem to have avoided responding to that.

I want us to critique Peter White's GET program on this thread (it was posted earlier). It is going to lead to a lot of acrimony if you are going to behave like you have done in recent posts e.g. yesterday. That's why I wanted to get you to say you felt some responsibility on the issue (of challenging him) and were grateful to the people who try to challenge him.

The statement:
I certainly think we all have a responsibility to challenge the false and exagerated claims made about CBT, GET and CFS. I'm grateful to those who put so much time and effort into doing so.
is pretty meaningless. "False and exaggerated claims" could be that everyone will get better within a month. It isn't well-defined. Peter White or somebody in his team could say it.

Given your contributions on this and other threads I have my suspicions you are not who you say you are.
 

Dolphin

Senior Member
Messages
17,566

fresh_eyes

happy to be here
Messages
900
Location
mountains of north carolina
Hi folks. I have not kept up with this long thread, so forgive me if this isn't relevant or I've missed things.

Hi TomK. I wanted to say that I appreciate your efforts on this thread, particularly posting the White NICE guidelines. I am in the US and don't have much specific knowledge about your situation over there, though I continue to be shocked and horrified. I think it would be very fruitful to hammer out precise, well-reasoned objections to each item. (I couldn't tell - are those guidelines still in use?)

Hi Esther12. Would it be safe to say that you don't think the NICE guidelines are necessarily so bad? If so, fair enough. I hope you can understand that others feel differently and want to discuss what they would like to see changed, without having to defend themselves at every step.

It's a challenge to wade through all the argument to get to the information here. Perhaps TomK could start a new thread for those who want to work together to critique White's NICE guidelines. I would like to read such a thread.
 
Messages
13,774
I want us to critique Peter White's GET program on this thread (it was posted earlier). It is going to lead to a lot of acrimony if you are going to behave like you have done in recent posts e.g. yesterday. That's why I wanted to get you to say you felt some responsibility on the issue (of challenging him) and were grateful to the people who try to challenge him.

The statement:

is pretty meaningless. "False and exaggerated claims" could be that everyone will get better within a month. It isn't well-defined. Peter White or somebody in his team could say it.

Given your contributions on this and other threads I have my suspicions you are not who you say you are.

You said "You haven't said he makes false and exaggerated claims".... and then when I do so you say that such a claim is meaningless. Why did you care about it in the first place then? I thought it was quite meaningless too, but it seemed of some import to you.

Anyway, I was replying to your belief that I'd said I felt I had no responsibility on this issue. A strange interpretation of my word either way, made especially amusing by the fact I'd quite clearly said the opposite earlier in this thread. You seem to have avoided responding to that.

That you're suspicions of my claim to be a CFS patient shows more about the workings of your mind than it does about my posts. Maybe CBT would help you deal with these problems.

You can read some of his views in an earlier post in the thread: http://forums.aboutmecfs.org/showpost.php?p=23378&postcount=112
If you start critiquing some of them, I might start believing who you say you are.

While if you say you are a patient living in the UK and have no major problems with them, I find it very odd.

I've not said I have no major problems with 'them' (depending on what the 'them' refers to - I didn't look through the information you posted, so gave no opinion on them way or the other).

Just now I was unable to find the St Bartholomew's Hospital Chronic Fatigue Services' comments on the NICE website, and I don't really feel terribly interested in spending much more time looking. Most of the ones you posted seemed more cautiously expressed than the psychological CFS work I have the most trouble with.

I don't think I'm likely to progress the debate about CBT and GET for CFS within the medical community. I don't have the skills or energy to do so.

If there's a particular medical paper White has written which you think is especially damning, I'd be happy to read it. I certainly understand that the psychological lobby has distorted the discussion of CFS, and think they're drawn to overblown and misleading statement about the nature of CFS and the efficacy of treatments like CBT and GET. On an emotional level I feel a fair amount of resentment and hatred towards them, but I also try not to let that affect my judgements. I also resent the rather childish, tribalist way in which some on this forum seem to think you need to fall into line behind particular beliefs or emotional responses before your comments or illness can be somehow validated. It seems like a hypocritical reflection of the way many in the psychological lobby treat CFS patients.

If you start critiquing some of them, I might start believing who you say you are.

How very generous of you. What if I decide Id rather not? What if I end up agreeing with some of Whites claims? What if Peter Whites miraculous treatments lead me to a full and complete recovery?

I think one of the dangers of internet forums is that they lead to people with very similar beliefs and experiences congregating and then never being exposed to alternative ideas. What a stale form of discourse that would be. It seems to be what some people want though.

Hi folks. I have not kept up with this long thread, so forgive me if this isn't relevant or I've missed things.

Hi TomK. I wanted to say that I appreciate your efforts on this thread, particularly posting the White NICE guidelines. I am in the US and don't have much specific knowledge about your situation over there, though I continue to be shocked and horrified. I think it would be very fruitful to hammer out precise, well-reasoned objections to each item. (I couldn't tell - are those guidelines still in use?)

Hi Esther12. Would it be safe to say that you don't think the NICE guidelines are necessarily so bad? If so, fair enough. I hope you can understand that others feel differently and want to discuss what they would like to see changed, without having to defend themselves at every step.

It's a challenge to wade through all the argument to get to the information here. Perhaps TomK could start a new thread for those who want to work together to critique White's NICE guidelines. I would like to read such a thread.

I did read the NICE guidelines recently, and didn't think they were that bad. The draft ones were absurd. I didn't think the NICE guidelines were that good, but it really depends upon what you expect. I started reading them after having read how unhappy most patients were with them, and maybe expected the worst; but I think that most of the contact I'd had with doctors prior to these guidelines was worse than what you'd expect from a doctor trying to follow the guidelines. Flawed as they are, I still think they're an improvement.

I understand that others can feel all sorts of things. Thats really not a problem.

If you look back through this thread, you'll see that I did not start this discussion by insisting that others defend themselves against me. My first post was not aimed at anyone in particular, but just an expression of my own ideas.
 

Dolphin

Senior Member
Messages
17,566
You said "You haven't said he makes false and exaggerated claims".... and then when I do so you say that such a claim is meaningless.
What you said in the last post was:
"I'm sure Peter White has made false and misleading claims, but I'm not familiar enough with his work to dismiss him"
That's not the same thing. There's no commitment in that. You are telling people you don't know much about him.

That you're suspicions of my claim to be a CFS patient shows more about the workings of your mind than it does about my posts.
When you say things like giving people disability benefits can impair their chances of recovery and mention psychobabble with regard to other conditions as you have done in other threads, I like others can wonder whether you are a patient who is out of work.

Esther12 said:
Just now I was unable to find the St Bartholomew's Hospital Chronic Fatigue Services' comments on the NICE website
You can find them in the following files: http://www.nice.org.uk/guidance/index.jsp?action=folder&o=36179

Open up any one and do a little search.
 

Cort

Phoenix Rising Founder
Lets keep this post on track. Its a difficult subject for many, for sure. There have been only a couple of blowups - almost all of which have concerned CBT. In each case someone starting questioning someones identity -and things went south quickly from there.

We're coming up with some guidelines for the forums. We haven't delivered them so no ones aware of them. One of them, however, is going to be not questioning someone affiliation or identity. It doesn't matter if Peter White himself comes on board as someone else and touts his case. Our focus, hopefully, is on the issue at hand - not at who's delivering it.

We're trying to get away from these kinds of statements

Given your contributions on this and other threads I have my suspicions you are not who you say you are.

so we can focus on the most critical part of the discussion - the information.
 
Messages
13,774
What you said in the last post was:

That's not the same thing. There's no commitment in that. You are telling people you don't know much about him.


When you say things like giving people disability benefits can impair their chances of recovery and mention psychobabble with regard to other conditions as you have done in other threads, I like others can wonder are you a patient who is out of work.


This is the sort of statement that makes it difficult to have a discussion with you.

I will repeat - here are some comments that Barts made on the draft NICE guidelines: http://forums.aboutmecfs.org/showpost.php?p=23378&postcount=112

You really don't seem to think there's any problem with quote mining. You're quite happy to do it on a forum, to posts people will have just read, or be able to search for. You didn't even feel the need to put '...' after "dismiss him". It's surreal to watch.

re this sort of statement: so what was the 'them' which you think I said I have no major problem with? I really don't know.

re NICE guidelines: I did look through the table of comments, and couldn't see them.
 

Dolphin

Senior Member
Messages
17,566
You really don't seem to think there's any problem with quote mining.
I restrained myself up to now in this thread. Then you started suggesting I need psychological help for wondering whether you are the person you say you are. So combining that with your rudeness in this thread, I felt it was justified.

re this sort of statement: so what was the 'them' which you think I said I have no major problem with? I really don't know..
I misread your post and edited the post which must have been at the time you were replying.

re NICE guidelines: I did look through the table of comments, and couldn't see them.
http://www.nice.org.uk/guidance/index.jsp?action=folder&o=36179

The table of contents one is at: http://www.nice.org.uk/nicemedia/pdf/CFSMECommentsNICE.pdf - search for "bart" as in "St Bartholomew's Hospital Chronic Fatigue Services"
 

Mithriel

Senior Member
Messages
690
Location
Scotland
Tom, you are a great asset to the ME community. Your activism and especially your ability to explain the deranged statistics of the weasels is marvellous. Your explanations of the empiric definition's shortcomings were admirable. I would rather have you posting about something relevant to us not this endless debate.

I am tired of reading someone's internal musings. I cannot follow it all with the cognitive problems we have in this disease. I agree with Fresh Eyes. Let's start a thread about CBT with people who have followed all the literature and know what they are talking about.

By all means carry on this thread amongst yourselves anybody who wants to do so.

Mithriel