CBT/GET potentially harmful to ME/CFS patients

[_Kim_]

This is a well-written review article on the harms of CBT/GET that I found it on THE NICEGUIDELINES BLOG: Doctor Speedy and ME in search of medical honesty.

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

Frank N.M. Twisk and Michael Maes

ME/CFS is considered to be a rather harmless condition by most physicians, but patients with ME/CFS are often more functionally impaired than those suffering from type 2 diabetes, congestive heart failure, multiple sclerosis, and end-stage renal disease

a) the evidence-based success claim for CBT/GET is unjust, since the evidence base is lacking and CBT/GET is not significantly more effective than usual care; and
b) the exertion, and thus GET, can have numerous potential damaging physical effects on ME/CFS patients.

The (bio)psychosocial model (CBT/GET) has been invalidated by research
a) Two pillars of this model, i.e. decreased exercise capacity is caused by kinesiophobia (fear of movement) and physical deconditioning is a perpetuating factor in ME/CFS, have been invalidated by research results.
b) Another misconception is the central role of specific personality traits presumed by the (bio)psychosocial model. According to various studies psychological factors play no role at all, or at the least a very minor one...no differences between patients with ME/CFS and rheumatoid arthritis in measures of perfectionism, attitudes toward mental illness, defensiveness, social desirability, or sensitivity to punishment (a concept related to neuroticism) were found. The authors stated their study also invalidated the stereotype of CFS sufferers as perfectionists with negative attitudes toward psychiatry....psychosocial and environmental factors (including personality, coping style, mood, and psychiatric history) have no significant effect on illness outcomes. According to this study post viral ME/CFS is almost exclusively genetically determined.

The evidence-based success claim for CBT/GET is unjust.
a) The evidence base for the success claim is almost non-existent
b) The effectiveness of CBT/GET is negligible
c) In clinical practice CBT/GET has proven to be counterproductive

CBT/GET is most likely to be harmful for many ME/CFS patients
a) Reduced exercise capacity and post-exertional malaise in ME/CFS. This slow rate of recovery is most likely to be the reason why ME/CFS patients are not able to increase their physical activities for a long time...The results suggest that a daily activity limit may exist in this patient population.
b) Neurocognitive abnormalities and the negative effects of exertion. The effects of exercise are not limited to psychical complaints, exercise also seem to have important consequences for the neurocognitive performance...Neurocognitive impairment have been demonstrated by various researchers over time. e.g. quantitative and qualitative differences in activation of the working memory network, significant decreases in motor speed and impairment in working memory, and greater efforts, i.e. the use of more extensive regions of the verbal working memory system network, to process auditory information...Hypoperfusion and reduced energy levels are plausible explanations for the brain fog often reported by ME/
CFS patients...Exertion has an negative impact on perfusion of the left prefrontal lobe and cerebral oxygenation, which very well could explain the sustained negative effect of exercise on neurocognitive performance
c) Inflammation, immune dysfunction and immune system impairment and the additional negative consequences of exertion...intracellular inflammation is strongly correlated to aches and pain, muscular tension, fatigue, and the subjective feeling of infection; and that oxidative and nitrosative damage to fatty acids and proteins is related to aches and pain, muscular tension and fatigue. The reduced exercise capacity seems also to be correlated with (intracellular) immune system abnormalities...abnormal immune activity in the pathology of exercise intolerance in ME/CFS and are consistent with a channelopathy involving oxidative stress and nitric oxide-related toxicity...exercise has important negative consequences
for the immune system of many ME/CFS patients, which is already impaired and activated at rest. In addition to these general extra negative effects of exercise on immune dysfunction and inflammation, the negative impact of exertion by ME/CFS patients on specific immunological components have also been established.
d) Oxidative and nitrosative stress and the additional negative impact of exercise. There is sufficient evidence that the induction of oxidative and nitrosative stress are important phenomena in the pathophysiology of ME/CFS...Since levels are very likely to be increased in ME/CFS already, the oxidative and nitrosative stress as a
result of exercise has an additional negative impact on the patients condition.
e) Muscle abnormalities in ME/CFS and the negative consequences of exertion. Metabolic dysfunction and structural damage to mitochondria in muscle cells has been demonstrated by various researchers...
f) The (muscoskeletal) pain in ME/CFS patients and the negative impact of exercise A hypersensitive central nervous system and cardiovascular abnormalities also seem to be play a role in the pathophysiological explanation for pain...This increase of (muscle) pain after exercise can be explained by various mechanisms: impaired oxygenation due to disturbed vasodilatation/ vasoconstriction homeostasis, accentuated oxidative and nitrosative
stress, additional induction of inflammatory pathways, altered muscle membrane excitability, reduced aerobic metabolism, hypoperfusion, and dysfunction of central anti-nociceptive mechanisms.
g) Impairment of the ion channel function in ME/CFS and potential effects of exertion. Channelopathy, i.e. abnormal ion channel function, also seems to play a central role in the pathogenesis of CFS...Several authors have suggested that channelopathy may account for fluctuating fatigue, exercise intolerance and other symptoms...Channelopathy seems to increase as a result of exertion.
h) Stress response disturbances in ME/CFS and negative effects of exercise Various studies have established hypothalamic-pituitary-adrenal (HPA) axis anomalies in ME/CFS, including an insufficient stress response...The ability to respond adequately to physical or emotional stress also seems to be impaired in ME/CFS
patients...solely based upon established HPA axis stress response aberrations, it seems very likely that the endocrine disturbances are caused or amplified by physical exertion.
i) GET can physically harm patients with ME/CFS Based upon the abovementioned observations and various other studies, it can be alleged that in ME/CFS exertion and, by inference, GET, have an negative impact on pre-existing abnormalities, e.g. physical limitations, neurocognitive impairment, immune dysfunction, inflammation, oxidative and nitrosative stress, channelopathy, (muscle) pain, muscle weakness and defective stress responses.

Not only is the evidence-based claim for CBT/GET unjust, there is compelling evidence that CBT/GET is potentially harmful for many ME/CFS patients. Numerous studies support the assertion that exercise and, consequently, GET, can aggravate several characteristic ME/CFS symptoms, e.g. neurocognitive complaints, reduced exercise capacity and widespread muscoskeletal pain, and amplifies pre-existing pathophysiological abnormalities in ME/CFS, e.g. immune dysfunction, induction of the IO&NS pathways, channelopathy and an impaired stress response. Large-scaled patient surveys and clinical practice show that CBT/GET often induces a deterioration of the clinical status of ME/CFS patients and is harmful for many patients. Therefore, it is medically unethical to subject ME/CFS patients to CBT/GET programs or variants, like GET with limits, without assessing biological abnormalities, monitoring functional impairment objectively and measuring the effect of exercise e.g. on the physical and neurocognitive performance

 

[leelaplay]

source?

This is a well-written review article on the harms of CBT/GET that I found it on THE NICEGUIDELINES BLOG: Doctor Speedy and ME in search of medical honesty.

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

Frank N.M. Twisk and Michael Maes

Hi Kim

I like what I could process of what they say in the article, but I think it's a bit of a hoax again. I'd love to find out that I'm wrong.

I believe it's patient advocates putting out a scientific -looking paper and trying to pass itself off as something it's not.

It concerns me because I believe this actually harms real research papers. There;s lots of good science out already; we don;t need fakes.

> the urls say blog and wordpress

> Twisk is from a patient foundation

> The intro includes what they've proved rather that what they intended to test.

>The NICE site is nice.org.uk/ (not one of these)

> NICE's guideline articles are at guidance.nice.org.uk/ (not one of these)

> neither site has any search results for the author names of Twisk or Maes

> I couldn't establish the professional standing of Neuroendocinology Letters, nel.edu/home. But the front page doesn't look very professional and includes

An international peer-reviewed medical journal
for RAPID publication of Original Papers, Review Articles from basic and clinical research.
6 issues / year, Copyright - Neuroendocrinology Letters 1997-2005
Published by Society of Integrated Sciences

and yes - RAPID is capitalized and in red
http://nel.edu/


if

 

[_Kim_]

This is getting more attention

There's been some discussion about this article at the WPI facebook page. Michael Maes is a Belgian Doctor at the Clinical Research Center for Mental Health (CRC-MH), Antwerp, Belgium. A look at his home page shows that he's been very very busy publishing articles on CFS lately. I don't think this is a hoax.

 

[leelaplay]

There's been some discussion about this article at the WPI facebook page. Michael Maes is a Belgian Doctor at the Clinical Research Center for Mental Health (CRC-MH), Antwerp, Belgium. A look at his home page shows that he's been very very busy publishing articles on CFS lately. I don't think this is a hoax.

That's great news Kim - some of the things I like in it are:

ME/CFS is considered to be a rather harmless condition by most physicians, but patients with ME/CFS are often more functionally impaired than those suffering from type 2 diabetes, congestive heart failure, multiple sclerosis, and end-stage renal disease

The (bio)psychosocial model (CBT/GET) has been invalidated by research

CBT/GET is most likely to be harmful for many ME/CFS patients

Large-scaled patient surveys and clinical practice show that CBT/GET often induces a deterioration of the clinical status of ME/CFS patients and is harmful for many patients. Therefore, it is medically unethical to subject ME/CFS patients to CBT/GET programs or variants, like GET with limits, without assessing biological abnormalities, monitoring functional impairment objectively and measuring the effect of exercise e.g. on the physical and neurocognitive performance

 

[Dolphin]

http://www.ediver.be/ediver/latest news/PRESS RELEASE CBT and GET in ME CFS.pdf

PRESS RELEASE

EXERCISE THERAPY/PSYCHOTHERAPY NOT ONLY INEFFECTIVE,
BUT ALSO POTENTIALLY HARMFUL FOR MANY PATIENTS WITH ME/CFS.

A recent review of the relevant scientific literature shows that the
"revalidation therapies" for patients with ME/CFS, which are monopolized by
the governmental institutions for example in the UK, Belgium and the
Netherlands, are not only not efficient, but also aggravate the condition of
many patients.


Antwerp (Belgium); Limmen (the Netherlands), October 27th, 2009.



ME/CFS is a debilitating disease, affecting many biological systems.
According to the CDC, the level of impairment of ME/CFS patients is often
comparable to that of patients with some well-known, very severe medical
conditions, such as MS, AIDS, end-stage renal failure, and chronic
obstructive pulmonary disease.


There is now sufficient evidence that ME/CFS is a disorder that
primarily involves an inflammation with dysregulated and suppressed
immune functions, oxidative stress, infections, autoimmunity and
mitochondrial dysfunction. During the last few years, many scientific
studies,
including gene expression research, have confirmed that patients with
ME/CFS suffer from the above organic disorders.


Despite several major scientific breakthroughs, ME/CFS is still
described in the popular media as a medically unexplained disorder.
Psychotherapy (cognitive behavioral therapy) and graded exercise therapy
(GET) are declared to be the only possible therapies.


A thorough analysis of the current medical scientific literature and
international patient surveys, however, shows that CBT/GET is not only
ineffective for the majority of the ME/CFS patients, but also potentially
very harmful. Scientific studies and large-scaled patient surveys have shown
that
treatments with CBT/GET seriously deteriorate the condition of many patients
with ME/CFS. The work capacity decreased as well!


The review also explains why GET and exercise do aggravate
characteristic complaints, like fatigue, pain, neurocognitive problems
(e.g. concentration and memory). Pre-existing biological aberrations, e.g.
inflammation, oxidative stress, and dysfunctional ion channels, will be
amplified by a minor exertion, like walking or reading a book and by
rehabilitation therapies like CBT/GET.


The reviewers urge policy makers to change their policies drastically,
by putting a stop to potentially harmful and ineffective "rehabilitation"
programs, and investing into medical research and therapies targeted at the
immune system, infections and other pathological aspects of this horrible
/wasting disease.


References:

Twisk FNM, Maes M. A review on Cognitive Behavorial Therapy (CBT) and
Graded Exercise Therapy (GET) in Myalgic Encephalomyelitis (ME) / Chronic
Fatigue Syndrome (CFS): CBT/GET is not only ineffective and not
evidencebased,
but also potentially harmful for many patients with ME/CFS. Neuro
Endocrinol Lett. 2009 Aug 26;30(3):284-299.

Maes M, Twisk FNM. Chronic fatigue syndrome: la bte noire of the Belgian
health care system. Neuro Endocrinol Lett. 2009 Aug 26;30(3):300-311.

Information:
Frank Twisk MBA BEd BEc
Stichting ME-de-patinten / ME-de-patinten Foundation
Zonnedauw 15
1906 HB Limmen
Nederland / the Netherlands
Tel. +31-(0)72-505 4775
frank.twisk@hetnet.nl
www.michaelmaes.com (here you can download the full text)

 

[cold_taste_of_tears]

Great article Kim, thank you.

 

[Esther12]

I think it's worth mentioning that people CBT and GET can be very loosely defined therapies and attacking or promoting them without looking at the specifics can lead people to talking at cross purposes.

Good CBT: helping people to think clearly about their illness, detach from unreasonable worries or rumination, and make the adaptations needed to help deal with their illness. (Personally I think most people, and certainly most GPs, would benefit from CBT to help them think more clearly and avoid their emotional reactions distorting their beliefs about reality.)

Bad CBT: encouraging people to pretend they're not ill.

Good GET: try to regulate exertion levels and avoid boom and bust, while trying to build up fitness through appropriate exercises. (Emphasis on APPROPRIATE: sadly, for many CFS patients, their illness and the demands of their lives leaves little or no room for any exercise program.) It also needs to be acknowledged that GET does not seem to bring improvements for many CFS patients, and can make symptoms worse, especially if carried out poorly.

Bad GET: Push yourself to do a little bit more each day until you get better.

Another problem with Good GET, is that it's very easy to confuse it with Bad GET. That could be why some of the trials for GET seem to perform so much better than when CRT is studied in the wild - especially if GET is administered by those with their own prejudices about GET.


Those are my thoughts anyway.

CFS, as it's currently diagnosed, will include people who would benefit from GET. I don't think I've found it helpful for myself (if anything, the opposite - but then it's almost impossible to DO Good GET properly), but we should not reject it for all just because it's been over-sold and linked to, as well as fostering, some rather unpleasant prejudices about CFS. Equally, I've never been able to get CBT (the mental health people keep assessing me and saying I'm too sane to benefit from it - too crazy for medicine, too sane for psychology), but I have read quite a lot about it, and think the broad underpinnings of this psychological approach are interesting and potentially useful for a lot of people, depending upon how they are applied and what you expect from them.

It's really difficult to write clearly and accurately about these matters when many of us will have had such personal experiences with them, and especially when a lot of the literature promoting CBT/GET falls short of these standards. But over-blown dismissals can just lead to others saying "They don't want to get well... they won't even try yadda yadda."

Because of the way GET/CBT is presented, and my own experiences with GET, I have developed an instinctive bias against GET, and can feel myself wanting to discredit papers supportive of GET while being far more accepting of claims opposed to GET. I expect the reverse is true for many in the medical community. I thought I'd mention this in case others have developed similar prejudices, and this ends up distorting the discussion here.

Sorry if that was a ramble.

 

[Navid]

Thanks for posting this. It think this report should be made a sticky post somewhere prominent on the site.

It's very important for people who are newly ill to know about these dangers both for their physical and psychological well-being.

when i first became ill (and even still now 5+ years later) i was constantly told (by drs. friends, family...everyone) to try and exercise...when i knew that even the slightest activity was going to cause me at a minimum to faint and maximum have a heart attack.

i now have medical proof that my heart is physically (and emotionally ; ) damaged by this disease and i am best when in a reclined position.

Believe you me....I would much prefer to be up and about...but it is dangerous for me....my body is protecting me from death by forcing me to stay in a reclined position.


thanks, lisag

 

[dsdmom]

I saw my pcp today and was really annoyed with him. He had a long talk with me about exercise and how I needed to be doing it as much as possible and how that was going to make me better. I made him clarify - because I do not agree that making myself feel sick is going to make me better. Or fix any immune problems or viruses I may have. His point (I guess) is that it will get better with time and all the studies show that exercise is helpful.

Well, it was clear to me that he does not read ALL the studies. He is not a cfs specialist. I was close to tears at one point. I have been sick for 3 years now. Prior to that I was always active - always doing something - snowboarding, hiking. biking, yoga, working out, etc. I'm sure may of you can relate. And suddenly I can't do 20 minutes without feeling like I have the worst case of the flu and if I go over that I will sleep for hours. And he told me that when I feel that way I cannot take a nap. What??? I'm a bit confused by this. Granted he's also my sleep doctor so I know is trying to hammer out some of my sleep issues so I sleep better at night, but still.

Sometimes I want to tear my hair out. I feel like there's no doctors around me that get this and if I were to see them I'm sure this pcp would disagree with them. Guess I'm going to have to get a new pcp at some point.

 

[George]

I saw my pcp today and was really annoyed with him. He had a long talk with me about exercise and how I needed to be doing it as much as possible and how that was going to make me better. I made him clarify - because I do not agree that making myself feel sick is going to make me better. Or fix any immune problems or viruses I may have. His point (I guess) is that it will get better with time and all the studies show that exercise is helpful.

Well, it was clear to me that he does not read ALL the studies. He is not a cfs specialist. I was close to tears at one point. I have been sick for 3 years now. Prior to that I was always active - always doing something - snowboarding, hiking. biking, yoga, working out, etc. I'm sure may of you can relate. And suddenly I can't do 20 minutes without feeling like I have the worst case of the flu and if I go over that I will sleep for hours. And he told me that when I feel that way I cannot take a nap. What??? I'm a bit confused by this. Granted he's also my sleep doctor so I know is trying to hammer out some of my sleep issues so I sleep better at night, but still.

Sometimes I want to tear my hair out. I feel like there's no doctors around me that get this and if I were to see them I'm sure this pcp would disagree with them. Guess I'm going to have to get a new pcp at some point.

Like you I was very active prior to this illness. It's taken me the last two years to get "down" to the appropriate level. I kept trying to do "something" since I was so goal oriented before. I've had to rethink my entire life. I figured out a couple of things that are important at least for me. One is that "PET" works where "GET" lands me in bed.(grins) Paced Exercise Therapy, I "exercise" for 5 min. each hour of the 12 hours per day that I'm up. I either do very gentle pull/push arm exercise (no weights) or 5 minutes of pacing the living room floor while deep breathing. At the end of the day I've had a full hour of exercise but in 5 min sets. If I try to do anything over this WHAMO, I'm in bed for days.

It took a long time to work out how much and what and how often. This is my MAX and I don't try to do over that amount. If I'm having a particularly difficult day or week I don't even do that much. However, I notice the days that I don't "exercise" I don't feel well, and my sleep is of poorer quality.

This amount seems to be enough to stop any more degeneration of muscle mass but I'm not building any either.

PWC's need to realize that what you use to think of as gentle is probably way too much now. Also that breaking up activities and using "preemptive rest periods" allows you to do way more than trying to do it all at once.

My day looks something like this:

12 hours sleep
1st hour up all heavy mental activity and light house keeping cooking
2nd 5 min exercise/ 55 min rest
3rd hour first 5 min exercise/rest for 20min/15 min light work/20 min rest
4rd hour first 5 min exercise/rest for 20min/15 min light work/20 min rest
5rd hour first 5 min exercise/rest for 20min/15 min light work/20 min rest
6rd hour first 5 min exercise/rest for 20min/15 min light work/20 min rest
7rd hour first 5 min exercise/rest for 20min/15 min light work/20 min rest
8rd hour first 5 min exercise/rest for 20min/15 min light work/20 min rest
9th hour 5 min exercise/15 min doing something light/rest for 40 min
10th hour 5 min exercise/10 min doing something light/rest for 45 min
11th hour 5 min exercise/55 min rest
12th hour 5 min exercise/55 min rest/bed​

I do it that way even on the days that I feel like I could do more. I read somewhere that giving your body the extra energy is like giving it a gift that it can use to heal. Using up all the energy on things that I want to do there is nothing left over to use for healing. So far all of the cases I've read that have gotten better have three things in common

Preemptive rest/strict energy scheduling. (PET instead of GET)
Having a relaxed attitude about being ill. (I guess this is CBT)
And time a period of 4 to 8 years.

Until something better comes along I'm going with this.

 

[Dolphin]

So far all of the cases I've read that have gotten better have three things in common

Preemptive rest/strict energy scheduling. (PET instead of GET)
Having a relaxed attitude about being ill. (I guess this is CBT)
And time a period of 4 to 8 years.

Until something better comes along I'm going with this.

Thanks for that.

However, have to reply:

Having a relaxed attitude about being ill. (I guess this is CBT)

"Have a relaxed attitude about being ill" is not CBT.
It may be taking a particular approach to life. CBT is done with an external person.

You may get better, but I'm not sure anything is guaranteed and I don't believe any time frame can be set on it. Many people reach a plateau of activity. But if one believes people should get better in 4-8 years, it's too easy to then blame the patient for doing something wrong.

 

[Dolphin]

I think it's worth mentioning that people CBT and GET can be very loosely defined therapies and attacking or promoting them without looking at the specifics can lead people to talking at cross purposes.

Good CBT: helping people to think clearly about their illness, detach from unreasonable worries or rumination, and make the adaptations needed to help deal with their illness. (Personally I think most people, and certainly most GPs, would benefit from CBT to help them think more clearly and avoid their emotional reactions distorting their beliefs about reality.)

Bad CBT: encouraging people to pretend they're not ill.

The CBT that is presented in the CFS literature as the evidence-based form suggests a particular approach to CFS.

So one can talk about that sort of CBT and criticise it.

I'm not going to try to summarise exactly what is said as have other things to do - it's basically the deconditioning model. So there is something specific that can be challenged.

 

[Mithriel]

As Tom says, CBT and GET as used in the UK have very specific meanings.

The people who did the studies which were used for the NICE guidelines and which are the basis for the NHS clinics believe that their patients may have had a virus initially but it has gone. However having the illness helped them escape social problems so they want to go on being ill.

CBT is to get them to realize that they are not actually physically ill any more and to face up to the problems that the illness is helping them avoid.

This imaginary illness is leaving them deconditioned so they feel bad when they exercise so get caught in a feedback loop with more deconditioning more pain and so on.

Graded exercise, where it is increased to a schedule no matter how the patient feels, is the answer.

Though some of these positions may be softened in practice at the clinics it is still the theory behind them.

Trudy Chalder wrote to a ward that a child might "scream with pain" but he should still be made to exercise.

This idea that the benefits of sickness keep us ill is the reason for refusing benefits, wheelchairs, painkillers and testing for other diseases.

It might have been Nancy Klimas who said that the British approach was denying people the advantages of psychological help. I have nothing against psychology as such but it has been corrupted in the UK.

Even if individuals have been helped, the POLICY is still the same and dangerous for us all.

Mithriel

 

[Esther12]

@ Tom & Mitheral:

I quite agree that CBT and GET can be damagingly applied, but I worry that dismissing CBT and GET without mentioning the specific applications of these treatments which you disagree with can be easily misinterpreted by others. Maybe it's just because I'm new to the board, and everyone here knows that when they talk of CBT and GET they are only refering to very specific models of these therapies; but that could well confuse new patients viewing, and also play up to the prejudices of any doctors lurking.

re "the British approach was denying people the advantages of psychological help"

I quite agree. Hopefully the XMRV and other biological research will encourage the psychologists to improve their own work. It seems like the King's College lot have given up on explanations after being endlessly shown to be wrong, and are now sticking to 'treatments'. Hopefully that will encourage others to fill the gap.

A paper like this one http://www.behavioralandbrainfunctions.com/content/5/1/10 seems to be suggesting a different type of CBT for the treatment of CFS (rather than just the management of)... and who knows, it may well be helpful for some. Personally I like the paper, not necessarily because I think it's on to anything, but rather because it seems honest about their uncertainty, and willing to make predictions which will help see if their explanation is right or wrong.

 

[Dolphin]

@ Tom & Mitheral:

I quite agree that CBT and GET can be damagingly applied, but I worry that dismissing CBT and GET without mentioning the specific applications of these treatments which you disagree with can be easily misinterpreted by others. Maybe it's just because I'm new to the board, and everyone here knows that when they talk of CBT and GET they are only refering to very specific models of these therapies; but that could well confuse new patients viewing, and also play up to the prejudices of any doctors lurking.

I'm not sure that my post: http://forums.aboutmecfs.org/showpost.php?p=19815&postcount=12 should necessarily "play up to any prejudices of doctors lurking". But if you describe it in such ways, you may suggest to doctors that it was a prejudiced post because of the power of suggestion or they will simply not go back to check what was actually said but because of your post will later recall that the thread had prejudiced posts.

Personally I'm not that worried about any prejudices of doctors who might be lurking. If people want to challenge what I or anyone else says in an open way, feel free. But I don't want to feel that we shouldn't say what we are thinking because of people who might possibly be reading it. As I say, if anyone else has concerns, they can always challenge what I or other people say.

I think it is at least partly because some ME/CFS patients and patient groups haven't challenged GET and CBT/GET sufficiently that we have ended up with the mess that we are in in for example the UK, Belgium, the Netherlands. And probably more countries will follow, the more public centres that are set up.

 

[Dolphin]

A paper like this one http://www.behavioralandbrainfunctions.com/content/5/1/10 seems to be suggesting a different type of CBT for the treatment of CFS (rather than just the management of)... and who knows, it may well be helpful for some. Personally I like the paper, not necessarily because I think it's on to anything, but rather because it seems honest about their uncertainty, and willing to make predictions which will help see if their explanation is right or wrong.

I read this before and found it a vague, speculative paper. There are lots of theories with regard to the illness. Personally I'd like more of the pie being given to study some of the more "physical" ones getting rather that the what has happened up to now, with a disproportionate amount of public research money (esp. outside the US) going to psychological/psychiatric research. But if people want to raise money to pay for such research, feel free.

Similarly the treatment and management facilities offered in public systems concentrate disproportionately on psychological and psychiatric theories and in particular models based around deconditioning.

One thing I was not convinced by in this paper was the mention of expectancy. It took me over 5 years to get diagnosed. An awful lot of the time during that period, I did not expect symptoms that occured and was not particularly focused on symptoms. I know others who weren't diagnosed for a while who were like that. (I only know I have the illness for that length of time looking back):

"However, this arousal response might be insufficient in solving the initial problem. An attempt of compensation would be to generate a stronger one. As there is no apparent solution to the individual, such attempts might be perceived as inadequate, resulting in negative stimulus and response outcome expectancy. Thus, a vicious circle is established, as the evaluation of the arousal response depends upon expectancies: negative expectations reinforce the arousal response [19]. This inappropriate learning process can be strengthened by attentiveness, corresponding with reports of increased focus on bodily sensations in CFS [5]."

"When the initial triggering factor subsides, classical conditioning may lead to associations between the arousal response and common neutral stimuli [47], like moderate physical activity. Therefore, inappropriate arousal may be precipitated in numerous situations."

"Prolonged arousal has a negative influence on memory and information processing [60]. Similar cognitive dysfunctions are found among CFS patients [17,18], giving further support to a hypothesis of sustained arousal. Such dysfunctions may be reinforced through mechanisms of conditioning, establishing negative response outcome expectancies, possibly explaining why patients evaluate their cognitive abilities as even lower than they really are [61]. According to CATS, perceived impairment may be a stronger predictor of outcome than the 'real' impairment, resulting in a self-fulfilling prophecy [19]."

I don't think the reason patients evaluate their cognitive abilities as impaired compared to previously is because of "negative response outcome expectancies". I think it is much more likely that the tests are often not picking up the abnormalities. Also a fMRI study found that patients with CFS had to work their brains harder to do the same level of cognitive test (an n-back test as I recall i.e. substract a constant like 7 from a total, working backwards).

-----

"Finally, the sustained arousal model seems to possess a kind of 'face validity' when appraised in relation to patients' uniform experience of an inability to respond properly to the physical and mental challenges of daily life [77]."

Speculation on my part but this makes me wonder if they like the theory as it gives the impression to the patient that they are interested in the biological factors when they may in fact see them as secondary or not as important as other factors.

 

[Esther12]

I'm not sure that my post: http://forums.aboutmecfs.org/showpost.php?p=19815&postcount=12 should necessarily "play up to any prejudices of doctors lurking". But if you describe it in such ways, you may suggest to doctors that it was a prejudiced post because of the power of suggestion or they will simply not go back to check what was actually said but because of your post will later recall that the thread had prejudiced posts.

Personally I'm not that worried about any prejudices of doctors who might be lurking. If people want to challenge what I or anyone else says in an open way, feel free. But I don't want to feel that we shouldn't say what we are thinking because of people who might possibly be reading it. As I say, if anyone else has concerns, they can always challenge what I or other people say.

I think it is at least partly because some ME/CFS patients and patient groups haven't challenged GET and CBT/GET sufficiently that we have ended up with the mess that we are in in for example the UK, Belgium, the Netherlands. And probably more countries will follow, the more public centres that are set up.

I think you're assuming I'm arguing with you when this is not the case.

I don't think your post plays up to any prejudices either.

You said "So one can talk about that sort of CBT and criticise it". I agree and was trying to clarify my point to make it clearer that I agreed, not contradict you. I don't think your posts have contradicted mine either.

I certainly have no problem with people criticising CBT and GET, I just think that because these terms can apply to such a range of approaches it is easy for misunderstandings to occur. It seems that this has cause a lot of trouble within the medical community, and as we're often reduced to acting as our own doctors, it would be best to try to avoid the same occuring here. I wouldn't want those who have recently developed CFS to be instinctively dismissive of anything that sounded like GET or CBT because of reading this forum, when therapies like these may be beneficial for some. They might not take the time to argue back.

I read this before and found it a vague, speculative paper.

Yes... and it was open about being vague and speculative. That's pretty impressive compared to most CFS papers imo.

 

[Dolphin]

Hi Kim

I like what I could process of what they say in the article, but I think it's a bit of a hoax again. I'd love to find out that I'm wrong.

I believe it's patient advocates putting out a scientific -looking paper and trying to pass itself off as something it's not.

It concerns me because I believe this actually harms real research papers. Theres lots of good science out already; we don;t need fakes.

> the urls say blog and wordpress

> Twisk is from a patient foundation

Hi islandfinn and all,

You are right that this is not an original research study. But a review does not have to be.

It is now listed in PubMed.

Dr. Michael Maes is a proper doctor who has had many studies published before.

Frank Twisk may only be from a patient organisation but he is just a co-author and there is no law that one has to have a PhD or MD to write an article. I've had letters published in various journals without either qualification (my education was interrupted because of ME/CFS).

NICEGuidelines is just one person who mentioned the article. He is not directly associated with the article so nothing that is on his site should detract from the article itself.

I think it is a great resource of studies that have found abnormalities in the response to exercise in ME/CFS. As well as other information on the topic.

And because it is PubMed-listed, can be referenced if writing in to journals and the like (I can see myself referring to it - when writing letters to the editor to medical journals, one is often restricted in how many references one can use e.g. some say 5, and one of them will be the original piece so effectively it is 4 which often isn't really enough to reference every study one might like to reference).

 

[Dolphin]

Because of the way GET/CBT is presented, and my own experiences with GET, I have developed an instinctive bias against GET, and can feel myself wanting to discredit papers supportive of GET while being far more accepting of claims opposed to GET. I expect the reverse is true for many in the medical community. I thought I'd mention this in case others have developed similar prejudices, and this ends up distorting the discussion here.

If patients don't challenge such papers, often nobody does - it is not important enough to most other people in their lives.

So I'm glad that some people do make the effort to gather the evidence against GET for all patients with CFS.

We should be free to make observations that we feel are valid. I don't accept that I or my colleagues necessarily deserve a label of being "prejudiced" because we are instinctly sceptical of claims about GET often based both on personal experiences, experiences of others and reading. If the observations are not valid, people can challenge them.

 

[Dolphin]

Good GET: try to regulate exertion levels and avoid boom and bust, while trying to build up fitness through appropriate exercises. (Emphasis on APPROPRIATE: sadly, for many CFS patients, their illness and the demands of their lives leaves little or no room for any exercise program.) It also needs to be acknowledged that GET does not seem to bring improvements for many CFS patients, and can make symptoms worse, especially if carried out poorly.

Bad GET: Push yourself to do a little bit more each day until you get better.

Using the term "appropriate" exercises, is "begging the question" or alternatively is meaningless.

We also do not know if everyone should necessarily be trying to build up their fitness. Trying to build up one's fitness may increase the chance of a relapse. Some people may be functioning at a level that their body can cope with - it may not be able to cope with a higher level of activity. Just like with a lot of interventions in medicine, the risks may outweigh the potential benefits.

More science on the issue would be good. The Twisk and Maes paper shows the numerous abnormalities that have been found in the illness. Basically the "normal rules" that "exercise is good for you" don't necessarily apply e.g. the oxidative stress that is caused by going for a walk may outweigh any benefits.

Rather than using the phrases, "good GET" and "bad GET", I think we should talk about good and bad exercise regimes. I'm now going to repeat what I say in the next post but basically GET in the ME/CFS field should describe programmes which do not generally "allow" you decrease depending on how you feel - using it in other ways is confusing. Phrases like "paced exercise" or "pacing with exercise" seem better for programs that might encourage exercise but they are seen as part of pacing.