Time for the Big Talk. How's the CAA doing?

[Dolphin]

My experience is that drs scan read looking for particular things and filter out all things they dont deem important.This is the only way they can deal with the vast amount of information hurled at them.They are very likely to focus on excercise and ignore the fine detail with potentially dire consequences

Yes. Also, programs don't tend to talk enough (IMO) about "dire consequences" - words like setback are sometimes used.

 

[Dolphin]

All the more reason to take action TODAY on issues pertaining to this:

2. April 26 is the deadline for saving the CFSAC.
Please read Cort's blog on this and send your testimony this week. http://www.forums.aboutmecfs.org/sho...save-the-cfsac!

In my last testimony to the CFSAC, I made the point that if the CDC was convening panel(s) to draw up management guidelines, without more people who were into the energy envelope/pacing model along with Leonard Jason, the guidelines would likely be unbalanced. I suggested some UK experts who were strong on this. (People in the UK may think about the issues more because of how much emphasis there is over there about GET and CBT based on GET).

But some people may think such suggestions might only apply to the CDC but I think they are more general. If you put together a panel of experts who recommend exercise to their patients, it seems to me they're likely to agree to some exercise guidelines.

I believe there are hopes that management and treatment guidelines are designed this year but I've lost track who are drawing them up (IACFS/ME? and/or CAA? and/or CFSAC).

 

[justinreilly]

May the "Teachers" Have the Wisdom to Be Students

...(2) I don't want this socalled "strengthening and conditioning program" imposed on me, or even talked about in such limited time as a doctor and a visiting patient with ME have; I don't want ANY of this "Advise patients "; "Educate patients "; "Encourage patients " - it is all interference with my life and such possibilities, concerns, interests, risks and pains I have living in my ME-ified body since 32 years: I WANT BIO-MEDICAL TREATMENT i.e. investigation and presciption of medicines, not exercises, for I know how futile or dangerous that is, and I WANT N0 MEDICAL DOCTORS TALKING WITH ME ABOUT EXERCISE AS 'THERAPY', 'PROGRAM' OR WHAT NOT with me...

[emphasis in original]

I'm totally with you, Maarten. There are probably a couple of dozen or so doctors worldwide qualified to "educate patients" and if you are reading a piece looking for advice on how to 'manage' 'CFS' patients you are not one of them. Unfortunately, when it come to ME, calling 99.999% of physicians by the label 'doctor', meaning 'teacher' in Latin, is a cruel irony.

This type of advice to doctors should be replaced with "Let your patients educate you."

 

[justinreilly]

Gerwyn,

As one who has crawled from the car to the house following a doctors visit that required a dangerous amount of activity (I should have used a wheelchair) I would say from your description that you tried too hard and you shouldn't have to justify not attempting to climb any stairs. Again, to a person I think that what have lost is so painful we are inclined to deny limitations and do too much with the slightest reprieve from the worst symptoms of a crash.

[emphasis added]

Very true!

 

[justinreilly]

Focus on the Severely Disabled is Appropriate, Helpful and 'Respectful'

A very real concern that I see running through the recent activity on this thread is that those amongst us who are the worst off are concerned that all recommendations acknowledge and take into account and respect their experience and lessons hard learned (often through being pushed into overexertion or doing so of their own volition - my own story).

I would hope that along the way we can give those amongst us with different experiences and perhaps less severe symptoms the same respect.

I am moderately affected (for an ME patient- ie worse than say the typical MS or cancer patient, but in the realm of the more disabling ME, nowhere nearly as bad as a bed- or wheelchair- bound ME patient). I don't think a focus on the worst affected is at all disrespectful of people like me. In fact, I think it is more respectful, because it recognizes the true gravity of the disease and helps us avoid falling into the realms of the severely disabled, as can too easily happen.

In addition, I think the comments that have been posted here re CBT and GET are totally applicable to the moderately affected, especially if those moderately affected wish to not have their disease progressed by their own doctors!

 

[CBS]

Well, maybe, maybe not. On average 25% dropped out (we're not given a breakdown).

Tom,

This is a very under appreciated phenomena in far too much of what gets approved by editorial boards. I once made the statement to an author, congratulations, you've shown that you can improve function in the 50% of subjects who stayed in your study (close to the percentage that improve without intervention). You've also shown that in retrospect you can justify not including so much as a passing reference to the 50% that didn't feel your study was worthwhile enough to see it through to completion.

Sometimes it is what you'll never know that really matters. I have seen so much slip through peer review it is nothing less than embarrassing.

 

[Martlet]

This is what I posted that you censored because *in your opinion* it was offensive. The movement is only a small part of the picture. It is also already on this web site on another thread, and not posted by me.

I don't read many posts until and unless they are reported as offensive. I just don't have time. As for "my opinion," it is an opinion shared by the several people who reported posts in this thread, this morning.

In my opinion threatening to shut down this thread is offensive.

Would you have preferred me to close it without warning???

But seriously, the tone was becoming very personal, as others have commented in public, as well as in private, and that can't be permitted to continue.

 

[justinreilly]

Thank You for Trying Out, GET and 'Activity'; Don't Call Us, We'll Call You. Next!

I remember the doctor that diagnosed me years ago said "you should start riding a bike". I said so you mean I can actually ride a bike? I felt happy about the fact he said I could even though I felt horrible. I pushed and pushed myself to do things rather then rest. 2 weeks later is when I wound up at the hospital with my heart rate going 180. It took 3 IV shots of I'm not sure what medication to bring my heart rate down to a normal rhythm. I thought I was going to die right there by myself in the ER since I had driven myself to the hospital. They said I could have gone into cardiac arrest on the drive there.

This is why I have a problem with doctor's or whoever that suggest exercise for all. Until the cause is found for this, how can a treatment be suggested. We are all affected differently and I think we all figure out what and what doesn't help. At least I have. Sometimes the hard way.

There are several people on this thread alone who have said that GET, exercise or activity prescribed by their doctors have put them into a kind of living death (for months, years or permanently) or probably close to actual death. Who knows how many years forced 'activity' have taken off of the lives of people on this thread alone (including me).

Why don't we all just accept that recommending 'activity' to a patient is contraindicated, agree that this is what should be broadcast in all materials and move on to therapies that have a greater chance of helping us, like say throwing ourselves down a flight of stairs (followed of course by five minutes of rest before another flight so as not to overdo it and noting of course that the most severe patients may or may not be benefited by this therapy).

Many patients exhibit the abnormal illness behavior of not throwing themselves down flights of stairs. Make sure to educate them that peer-reviewed studies in BMJ prove throwing yourself down the stairs always helps and never hurts. Patients may have the abnormal illness belief that concussions and broken bones are not part of the healing process, so insist they push through this neurotic treatment resistance and kinesiophobia (irrational fear of movement).

 

[jackie]

Justin...I hope its ok to laugh at your idea of "stair-falling" as therapy (i especially liked the part where we should rest in between flights!)

The visual of that got to me...and i can't tell you how often (when things get REALLY bad) I've stood on my staircase landing...trying to ignore that nagging little voice saying "go on...do it!" - like something out of a tragically awful Bette Davis movie....me cartwheeling end over end down the stairs..only to dust myself off and rest for a few before trying again!

(obviously...i've chosen to ignore the advice. All seriousness has left me now and I'm just plain giddy! Thanks for the comic relief...j:Retro wink

 

[Dolphin]

The odd thing is that I don't even care about 'exercise programs'. I do my little exercise - my little walking every other day - it definitely does help - and then that's it. I don't think of 'exercise' as a treatment. As an avid exerciser before I got ill I banged myself against the exercise wall, on and off, fruitlessly, for 10 or 15 years vainly hoping that this aspect of my life that I held so dear would return. Finally I got the message - I can engage in no 'exercise' as I knew it, without crashing.

Now I simply think of it as a way - for me - of keeping my body as fit as possible - within its realm of unfitness! Thats basically what I think of that portion of the CME as well.

(Apologies if this repeats what has been said):
The program says:

"A strengthening and conditioning program can reduce pain, prevent muscle spasms, increase strength and flexibility, improve balance, reduce falls, and enhance stamina and function in CFS patients.[78]

Those to me are more like treatment claims rather than saying exercise is just being done to just avoid negative effects of deconditioning.

To me, a good pacing program should mean that people will be as active as possible.

 

[Dolphin]

As for CFS/ME, this is never going to be a black and white issue, as Cort has repeatedly tried to point out. Exercise or pacing MAY help SOME people, and it MAY be VERY HARMFUL for others.

I don't accept that pacing is in the same league as exercise with regard to harm. I'm not sure there really is much harm associated with pacing at all - the surveys don't find it e.g. it was the safest in the CAA survey (follow link in my sig) - 1 person out of 601 people said it was harmful (0.2%).

 

[Dolphin]

Sorry, but not true -- from post-polio.org:

Advising all polio survivors not to exercise is as irresponsible as advising all polio survivors to exercise. "Recovery from paralysis is thought to be due to the re-sprouting of nerve endings to orphaned muscle fibers creating enlarged motor units. Recovery is also attributed to exercise that facilitates the enlargement of innervated muscle fibers. For example, some polio survivors regained the use of their arms and have walked for years with crutches. Others regained the ability to walk without the aid of braces, crutches, etc., and have continued to walk for decades."

http://www.post-polio.org/edu/pphnews/pph19-2a.html

Dr. Richard Bruno, a post-polio survivor and one of the experts on post-polio syndrome, said he finds the biggest problem is getting patients to use aids and generally they are inclined to do too much to their detriment (not exact quote).

It's interesting that somebody with the illness can often tend to have different perspectives.

 

[CBS]

Dr. Richard Bruno, a post-polio survivor and one of the experts on post-polio syndrome, said he finds the biggest problem is getting patients to use aids and generally they are inclined to do too much to their detriment (not exact quote).

It's interesting that somebody with the illness can often tend to have different perspectives.

I have a close uncle with post polio syndrome. The pushing too hard describes him to a tee. He felt like he was not going to let his bout with polio define his life. He's 64 and in real trouble now. I don't know if he feels that all the effort and the active years were worth it (he probably does) but when I see him I wonder about the sub-clinical damage being done in CFS patients and what we'll look like as we age into our later years after decades of having this disease.

 

[Dolphin]

just to be clear - in my case i never said that any of my docs didn't BELIEVE in me/cfs - i know they do...some don't "get" - and perhaps WON'T "get" the pem/activity/exercise bits (and one is a lousy speller)....and that is what is in question here, i think?

I'D like to take a survey. nobody has ever asked me to take one. maybe i AM posting on a forum because im not being heard and nobody listens to me. I have to think about that. if so...im glad im here because i think somebody IS listening to me (thank you koan...and what jerry said, too!)

btw...wasn't it dr. byron hyde who made home visits (the first visit was just to make contact..i think he was secretly evaluating folks to try and look through their "visitor" faces!...then he went back a few days later to see what effect his visit and their natural effort to appear "ok" had had on them! smart man! oh to have a doc like THAT!

im posting on THIS thread (probably stupidly and at great risk of you-guessed-it!...PEM) because i wanted to make my one wish known...i know we cant always get what we want (and in my experience we rarely do, with this disease!)...but if we dont even ASK....?)

j (all worn out now)

Hi jackie, the CAA have a (IMO, good) free e-newsletter. Last year they ran some surveys which they mentioned in it and, IIRC, they were talking about doing more.

Hope123 suggested the CAA run another treatment survey as they published the last one in 1999. Maybe they will but of course, they have lots of things to be doing.
Sometimes other groups also offer online surveys.

Of course, surveys can be a bit restrictive in the answers they allow so people taking the time to share more detailed, qualitative, information is useful and interesting.

 

[Dolphin]

Well, maybe, maybe not. On average 25% dropped out (we're not given a breakdown).

Tom,

This is a very under appreciated phenomena in far too much of what gets approved by editorial boards. I once made the statement to an author, congratulations, you've shown that you can improve function in the 50% of subjects who stayed in your study (close to the percentage that improve without intervention). You've also shown that in retrospect you can justify not including so much as a passing reference to the 50% that didn't feel your study was worthwhile enough to see it through to completion.

Sometimes it is what you'll never know that really matters. I have seen so much slip through peer review it is nothing less than embarrassing.

Yes.
A couple of specific points come to mind. There are some Dutch CBT studies that say X percentage recovered following the intervention. When you look closely, the outcome measures are often not very good or prove much. Think this can sort of fit in with your point. They also recently released actometer data for studies - one of them, Prins (2001) was published nearly a decade ago. Claims in the original paper that the patients improved their physical functioning (based on the SF-36) don't look so good when you see they didn't do any more steps than the control group (i.e. there was a slight increase but there was also a slight increase in the control group).

In the Cochrane review of GET for CFS, they looked at drop-outs. There was a higher number in the active intervention group. It didn't reach a cut-off of p<.05 so wasn't mentioned again even though there was a trend (p=0.07 IIRC).

On the study in question, Dr. Ellen Goudsmit said:

The drop-out rates were similar to those found for CBT trials (av.25%) but higher than those for multi-dimensional trials e.g. Goudsmit and Ho-Yen.

The Goudsmit and Ho-Yen program was based around pacing. It was based on Ellen's Ph.D. She did her Ph.D. in 1996 but found that it didn't seem to have much status and tended to be ignored so she published a paper on it in Patient Education and Counselling last year. She's a psychologist and a patient and I have learned a lot from reading her stuff. She really knows the literature well (she says she has read 99% of the papers that have been published).

 

[Dolphin]

Extract from "Non-pharmacologic interventions for CFS" (Jason et al. (2007))

Extract from:
Jason, LA., Torres-Harding, S., Friedberg, F., Corradi, K., Njoku, MG., Donalek, J., Reynolds, N., Brown, M. Weitner, BB., Rademaker, A and Papernik, M.
Non-pharmacologic interventions for CFS: a randomized trial.
Journal of Clinical Psychology in Medical Settings, 2007, 14, 4, 275-296.

"Previous findings from participant questionnaires and
some non-pharmacologic clinical trials regarding the
acceptability of non-pharmacologic treatments have produced
mixed results. For example, a survey of 3,228
respondents (Preliminary Report, 2001) and a separate
survey sponsored by the ME Association (Cooper, 2001)
found that graded exercise was felt to be the type of
treatment that made more people with CFS worse than any
other. Edmonds et al. (2004) reviewed randomized controlled
trials of using exercise, and concluded that these
treatments are less acceptable to patients than other
approaches such as rest and pacing. Recent findings suggest
that there might be some patients who are particularly
sensitive to exercise exertion, particularly of the aerobic
type, and it was for this reason that the present study
selected an anaerobic type of exercise. While in healthy
controls, exercise increases pain threshold by releasing
endogenous opioids and growth factors, individuals with
CFS have reductions in pain threshold after modest exercise
(Whiteside, Hansen, & Chaudhuri, 2004). Peckerman
et al. (2003) have suggested that there might be left ventricular
dysfunction in the heart of some patients with CFS,
and lower cardiac output could make it difficult for patients
to exercise. Black, O'Connor, and McCully (2005) found
that 28% on average increases in daily physical activity for
a 4-week period among a sample of people with CFS
resulted in worsening overall mood, muscle pain intensity,
and time spent each day with fatigue. Black and McCully
(2005) concluded that patients with CFS developed exercise
intolerance as demonstrated by reduced total activity
after 4-10 days. Clearly, clinicians and investigators need
to closely monitior potentially iatrogenic effects of interventions,
and such assessments might help researchers
better determine which non-pharmacologic interventions
are best delivered to patients with CFS."

 

[justinreilly]

CAA Must Submit Their Publications for Review by the Real Experts

(I wrote this out earlier, as a follow on from my other posts on the exercise phobia psychobabble. I haven't read all the messages in between yet.)

Just to look at the source of this comment from the CME:



These are the references they give:



Unfortunately I cannot get the second paper, but it is a review rather than a study, so if he does mention this avoidance he is probably just quoting someone else's (CBT-school friendly) opinion. There is no evidence for the avoidant behaviour theory.

The first reference is an editorial, i.e. an opinion piece, also not a study, by Andrew Lloyd who is CBT School (though he has done some interesting research recently into infections and ME/CFS).

So the CME is getting some of its ideas directly from the CBT school. (I also noticed some other questionable comments, and sources for those comments, in the CME matierial but I want to focus on this issue now).

I had a post earlier about the CBT school and their thinking on our allegedly avoidant behaviour
http://www.forums.aboutmecfs.org/sh...-s-the-CAA-doing&p=69923&viewfull=1#post69923

Just to look at that Andrew Lloyd editorial. Even the title is problematic:



And this is what he says about our behaviour (it is typical CBT-School stuff).



[These people think we don't have an ongoing disease but are misinterpreting normal bodily sensations as signs of disease. They think our misinterpretaton of symptoms, leads us to engage in abnormal behaviour, and they think that it is this (rather than any disease) that causes our symptoms. So to summarise, they think that our incorrect thinking and behaviour causes the continuation of symptoms. Back to Lloyd's Editorial]



So they don't believe us in what we say about exercise. They also decide in their own head what we are thinking, and just run with their own view of what they think we think and do (CBT-School people often have an extreme and distorted view of how we think and behave).

They want to give us CBT to change our beliefs that we have an organic condition causing a problem with exertion, so that we will stop being silly and get back to normal. That is it in a nutshell.

Notice the use of the word may (in "may reach the conclusion that it is best to avoid exercise") They don't have evidence, they are just guessing that we are behaving in a certain way, and they go on to base their whole ideology and treatment on their own abstract intellectual speculation.

Patients tend to only avoid the exertion that causes a bad pay-back. So they might do a bit of exercise, or some sort of exertion, but try to stay within their limits. Many patients with ME/CFS do exercise but within their limit. Others exercise some of the time, when they can. Relapsing/bad flare-ups from over-exertion is a common problem. This problem would not exist if patients were avoiding these activities.

There is no evidence that ME/CFS patients abnormally avoid activity, never mind the " inappropriately avoid all activity" that the CME would have us believe.

Funnily enough (or not funny really) the CAA actually word their comment more strongly than Andrew Lloyd does here, as he just talking about avoiding exercise (so in theory the doctors might just pick on you for not exercising, and not start thinking you were avoiding ALL, or other, activities, or basically choosing not to do things). All of Andrew Lloyd's references for his Editorial are from the psychosocial school of thought, other than the reference to the SF-36 (this is a questionnaire to assess people's self-assessed functioning in areas such as physical and emotional functioning, so it is basically a technical sort of thing).

[This Lloyd Editorial is bizzarely contradictory. On the one hand Llyod basically criticises patients for avoiding exertion which makes them worse, and suggests CBT to modify their thoughts and behaviours, but then seems to think avoiding pay-back is ok, though only when it fits his agenda (He only mentions this is ok in the context of a "graded" exercise programme, where the patients are being good little boys and girls. It is not graded of course if their activity levels are fluctuating, and there is no evidence that patients actually increase activity on GET programmes).]

Yet more iron-clad evidence that CAA are incompetent amateurs playing with our health and lives. They need to be supervised like hawks by the real experts like Orla, Gerwyn, Tom K. and others on PR fora. There is absolutely zero excuse for not submitting their current and future publications to these experts for final editing. I consider refusing to do so from now onward as intentionally reckless and harmful behavior against all PwME.

 

[gracenote]

Extract from:
Jason, LA., Torres-Harding, S., Friedberg, F., Corradi, K., Njoku, MG., Donalek, J., Reynolds, N., Brown, M. Weitner, BB., Rademaker, A and Papernik, M.
Non-pharmacologic interventions for CFS: a randomized trial.
Journal of Clinical Psychology in Medical Settings, 2007, 14, 4, 275-296.

Here is a link to the full text.

View attachment Jason - 2007 Non-p.pdf

 

[Dolphin]

Here is a link to the full text.

Non-pharmacologic Interventions for CFS: A Randomized Trial

FYI Link doesn't work for me - asks me for student ID number (of course if it works for some people, that's great).

 

[gracenote]

FYI Link doesn't work for me - asks me for student ID number (of course if it works for some people, that's great).

Sorry, tomk. See if this works. I'll go change the other.

View attachment Jason - 2007 Non-p.pdf