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

Roy S

former DC ME/CFS lobbyist
Messages
1,376
Location
Illinois, USA
This thread covers far more subjects than the one you stated. These are ongoing subjects that are vital to the entire CFS community. It is the most active thread on the web site. If it is closed it will just become buried in the archives.

Is there a behind the scenes campaign to shut this thread down so that the information just gets buried in the archives?




This thread was definitely true to its 'Big Talk' title, this one is almost 1,500 posts now, this is the largest thread on the forum. I have not read through the entire thread but just sampled a few posts here and there and am wondering whether people think the topic deserves more discussion? Maybe someone can summarize the main argument, but from what I just saw going through this most members here agree that the CAA should revise its medical training materials to either remove or strenuously qualify all references to GET. Is that the gist of this? Do we really need another thousand posts to make that point to the CAA?

I am happy to close this thread if its time has come, due to 'thread fatigue'. And if members have other specific issues with CAA they can always start new threads in the future. How does that sound?
 

jackie

Senior Member
Messages
591
It all begins to make sense! Firstly...I might as well tell my maiden name...McBRIDE (my father was Jack, my grandfather was Perry...added to the Gourley's, the Duckworths (they insinuated themselves into the family tree), and the damned, self-described Black Irish Doheney's I married into - for the unlucky FIRST time! ("Blather" was my mother's favorite word.)

In my early twenties I had an opportunity to study in a local community college Irish Gaelic (although I'm lousy with lanquages, some bad hs French and pretty fractured Latin)...I dearly loved the lessons, and was lucky that I knew an elderly couple that let me come to their house to try to practice. Unfortunately the man didn't like the basic dialect I was learning and would shout at me "I'm a Kerry Man!"...by way of saying that my sentences were unintelligible.

We'd end up dancing to his accordian and fiddle playing...and my partner Mac ( a feisty little man about 5' tall who'd been a jockey), would chide me if I got too rambunctious by crying "NO shapin'!
In fact...the wife was the sweet woman i eventually "read to death" in a nursing home (more about this on another thread!)

Anyway...one of the other Gaelic students (knowing i was an artist, liked to share stories about a young struggling cartoonist who lived next door to him...the crazy characters he was developing and how the artist was so sure he'd "make it" one day. He was right...the artist's name was Matt Groening...the "father" of The Simpsons"! small world.

I've been laughing until my sides ache over my indiscriminate reference and the ensuing confusion of poor Tom...to The Poms! I'm cringing as I've been throwing these tags around for months...without realising! You people are all just too funny for words! (Justin, you're right about the "Irish" in the States!...but it's usually true!) I want ALL your phone numbers---so I can hear these wonderful voices/accents for myself.

(The best part is imagining a bunch of Pommie Bastards skulking and hiding and creeping about in my living room...glazed eyes and hackels raised!)

Thanks all...for lightening my heart and giving me a good laugh tonight!....and I solemnly SWEAR not to hi-jack ANY MORE...I'll slink away completely, Poms in tow!

("Ta me go maith go raibh maith agat"...(the first phrase i learned).
A language so hard to wrap the tongue around, but so beautiful to hear!...j:Retro smile: slinking off
 

starryeyes

Senior Member
Messages
1,558
Location
Bay Area, California
I hadn't gotten this far in the thread yet when I posted about Graded Reading.. I swear!

Tom K posted:
Peter White/Barts CF/CFS Service might have the answer for that symptom - this was a submission on the draft NICE guidelines:
http://forums.aboutmecfs.org/showthread.php?t=1757 (one of links in my sig)
(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.

GDG (who put the final guidelines together):
Noted and removed – we consider that the text on including cognitive activities addresses these points.
Peter White was very close to Bill Reeves in the CDC - fingers crossed he loses his influence.


Okay, now I have heard it all. I'm scared too... is this Graded Reading Therapy going to show up in the next CME put out by the CAA now? :Retro wink:
 
G

Gerwyn

Guest
Why dont the CAA use the following in their CME

Two hypotheses have been presented as underlying the CBT model of chronic fatigue syndrome (105). The first hypothesis "assumes that the pathophysiology of CFS is largely irreversible, but considers that a fine-tuning of the patient's understanding and coping behavior may achieve some improvement in his or her quality of life." The second hypothesis is based on the premise that the patient's impairments are learned due to wrong thinking, and "considers the pathophysiology of CFS to be entirely reversible and perpetuated only by the interaction of cognition, behavior, and emotional processes. According to this model, CBT should not only improve the quality of the patient's life, but could be potentially curative" (105). Some proponents suggest that "ideally general practitioners should diagnose CFS and refer patients to a psychotherapist for CBT without detours to medical specialists as in other functional somatic syndromes" (106,107).

The first hypothesis seems reasonable within the multi causal biopsychosocial model of disease and illness, however a cure may be found. But there is much that is objectionable in the very value-laden second hypothesis, with its implied primary causal role of cognitive, behavioral and emotional processes in the genesis of ME/CFS. This hypothesis is far from being confirmed, either on the basis of research findings or from its empirical results. Nevertheless, the assumption of its truth by some has been used to influence attitudes and decisions within the medical community and the general cultural and social milieu of ME/CFS. To ignore the demonstrated biological pathology of this illness, to disregard the patient's autonomy and experience and tell them to ignore their symptoms, all too often leads to blaming patients for their illness and withholding medical support and treatment.

It is unlikely that the CBT and GET studies that were included in the recent review of treatments (108) dealt with comparable homogeneous groups since different inclusion and exclusion criteria were used in selecting the test patients and control groups. For example, in the Prins et al. (106) CBT study on ME/CFS, patients had to meet the CDC criteria "with the exception of the criterion requiring four of eight additional symptoms to be present." If the sole CDC criterion that patients had to meet was prolonged fatigue, is not this study on chronic fatigue, rather than ME/CFS? In a study by Fulcher and White (109), comparing graded aerobic exercise to flexibility therapy, ME/CFS patients who had an appreciable sleep disturbance were excluded because of the effect that poor sleep has on fatigue. This is puzzling as in a study of symptom prevalence and severity by De Becker et al. (45), 94.8% of 951 patients meeting the Holmes criteria, and 91.9% of 1,578 patients meeting the Fukuda criteria, reported sleep disturbance with an average severity of 2.5 and 2.4, respectively, out of 3. When sleep disturbance is such an integral part of ME/CFS, do the findings in the Fulcher and White study (109) apply to ME/CFS?

A systematic review of prognosis studies show that the less stringent the clinical criteria, the better the prognosis (74). In two of the studies reviewed (110,37), 22% and 26% of patients with chronic fatigue reported recovery, respectively, whereas none and 6% of the ME/CFS patients recovered from fatigue. Therefore, care must be taken not to classify patients experiencing chronic fatigue as ME/CFS patients unless they meet all the criteria for ME/CFS, as the outcomes for these two patient groups are substantially different. It is interesting to note that in the treatment review (108), all the CBT and GET studies that indicated improvement used the less restrictive Oxford criteria with the exception of the Prins study (106) that used the CDC criteria for prolonged fatigue but eliminated the other CDC criteria. All studies excluded ME/CFS patients who were too ill to regularly attend treatment sessions.

The complexity of CBT studies, their varied inclusion and exclusion criteria, the very limited portions that can be properly blinded, and the subjective means used for most evaluations, puts in question the validity of their results. In addition, the numerous variables between the CBT studies, the CBTs and control programs, the different comparison therapies, and the varied frequency and duration of therapy, make it very challenging to determine which parts are responsible for any perceived improvement. Are any effects due to the shift in cognitive beliefs, the exercise involved, the amount and quality of the attention and counseling, the discontinuance of other medical therapies during the test period, etc.? Thus the Powell et al. study (111) found GET alone to be as effective as CBT, and the Risdale et al. study (112) found CBT to be no more effective than counseling.

The GETs included in the review (108) generally involved graded aerobic activities with variable amounts of supervision. These three studies (109,111,113) showed positive effects but the results were modest. Although the more carefully supervised study of Fulcher and White (109) found that 55% of the patients improved over a three month period compared to 27% of patients given flexibility and relaxation exercises, the most common result in both groups was "feeling a little better." Since "graded aerobic exercises programs can help reduce incapacity and symptoms in many chronic and painful conditions" (109), one wonders about the specificity of any effects in ME/CFS patients.

Do study results represent a true reflection of the ME/CFS population when there is a high dropout rate? The Prins et al. study (106) on CBT reported significant improvement in fatigue severity in 35% (20 of 58) of the patients. However, these figures do not reflect that 26% (99 of 377) of the patients who were eligible for the study "refused to take part," and of the 93 patients who were assigned to CBT, 41% (38) did not complete the trial. In a British study (100), 1,214 of 2,338 patients had tried graded exercise. Of these 417 found it to be helpful, 197 reported no change and 610 (50%) indicated that it made their condition worse. This was the highest negative rating of any of the pharmacological, non-pharmacological and alternate approaches of management covered in the questionnaire and may help explain the high drop out rates noted in some of these programs.

The question arises whether a formal CBT or GET program adds anything to what is available in the ordinary medical setting. A well informed physician empowers the patient by respecting their experiences, counsels the patients in coping strategies, and helps them achieve optimal exercise and activity levels within their limits in a common sense, non-ideological manner, which is not tied to deadlines or other hidden agenda.

Physicians must take as much care in prescribing appropriate exercise as in prescribing medications to ME/CFS patients (100). Attending physicians should only approve of exercise programs in which the patient's autonomy is respected, appropriate pacing is encouraged, fluctuations in severity of symptoms are taken into account, and adequate rest periods are incorporated. Patients should be monitored frequently but unobtrusively for signs of relapse.
 

lansbergen

Senior Member
Messages
2,512
Why dont the CAA use the following in their CME

Two hypotheses have been presented as underlying the CBT model of chronic fatigue syndrome (105). The first hypothesis "assumes that the pathophysiology of CFS is largely irreversible, but considers that a fine-tuning of the patient's understanding and coping behavior may achieve some improvement in his or her quality of life." .

Who assumes that the pathophysiology of CFS is largely irreversible?

From not knowing and/or understanding the pathophysiology to assuming it is irreversible is a big step.
 

starryeyes

Senior Member
Messages
1,558
Location
Bay Area, California
I want to thank everyone for facing this thread again and again in an attempt to settle this very difficult issue. It has been a sometimes painful experience for everyone.

There remains a basic disagreement regarding what the take-away will be for your average doctor. Many of us, myself included, believe that what "exercise" means and how it is understood in a clinical setting is so ingrained in the mind of the practitioner that it should not be mentioned as part of a strategy to address the needs of the CFS patient at this time. The danger of deconditioning is not as great as that of inappropriately applied advice about increased activity.

Even the best, most aware and enlightened doctors cling stubbornly to the idea that exercise is always beneficial. Please see the following post from our own DrDonnica for an example of that in action. While few doctors are as intimately aware of the realities of ME/CFS, I believe even she cannot completely understand the potential harm that can result from exercise when one is ill. Below she discusses her exchange with Dr Oz re "exercise".

Dr. Donnica says she is happy she got her son to get on the threadmill for 5 min.



We will need to be patient with each other as we work through this. If DrDonnica can put her son on a treadmill during a relapse, we know that doctors really don't grasp the interplay of excercise and remission/relapse in ME/CFS. And, if we find it a challenge to communicate the complexities of this issue to each other it is understandable that the uninitiated could easily get it badly wrong.

Nobody said this was easy.

Peace to all the lovely people!

Koan

Thank you for posting this Koan. I had missed that exercise during a relapse bit the first time I read this months ago. I recall at the time Dr. Donnica posted this she had said that she was happy her son was doing better and then that she was deflated the next day because he was doing badly again. I'm not sure when in that time he walked on the treadmill.

I find this extremely upsetting probably because I suffer every day and I hate to think that others are going through anything like I am especially if it's preventable.

We have to start with educating the doctors and that's what the CME does so it needs to do a good job of explaining the exercise conundrum in CFS and neither of the ones the CAA has online do. This GET is the kind of "treatment" for CFS that the CAA is teaching our doctors we need and that includes the kids who have CFS as well and doing it at the wrong time can be very damaging to us.
 

Mithriel

Senior Member
Messages
690
Location
Scotland
Lansbergen wrote

Who assumes that the pathophysiology of CFS is largely irreversible?

From not knowing and/or understanding the pathophysiology to assuming it is irreversible is a big step.

ME has always been considered life long if it doesn't resolve in the first few years. A patient may reach a plateau of energy expenditure where they can be more or less symptom free, but if they exceed that limit they can relapse badly, even permanently. This is important because quite a few people have ruined their health by thinking thye were cured rather than in a remission.

Research by MEActionUK found that the blood vessels of patients with ME lose their elasticity. This is unlikely to be reversible.

The heart problems discovered by the NIH and studied by Paul Cheney are unlikely to be reversible.

And, of course, a retrovirus is a lifelong infection as is EBV and ME was thought to be caused by a continuing Coxsackie B infection.

There are also the effects of prolonged inactivity, all those risks increased by deconditioning :Retro smile: diabetes, heart disease and so on.

Many of us have neurological damage which is unlikely to be reversible. Me is considered a primarily neurological disease, though neuroimmune is probably the best description of ME/CFS.

Medical breakthroughs may happen, but we are unlikely to ever have the health we would have had without ME/CFS.

Mithriel
 

lansbergen

Senior Member
Messages
2,512
Lansbergen wrote



ME has always been considered life long if it doesn't resolve in the first few years. A patient may reach a plateau of energy expenditure where they can be more or less symptom free, but if they exceed that limit they can relapse badly, even permanently. This is important because quite a few people have ruined their health by thinking thye were cured rather than in a remission.

Research by MEActionUK found that the blood vessels of patients with ME lose their elasticity. This is unlikely to be reversible.

The heart problems discovered by the NIH and studied by Paul Cheney are unlikely to be reversible.

And, of course, a retrovirus is a lifelong infection as is EBV and ME was thought to be caused by a continuing Coxsackie B infection.

There are also the effects of prolonged inactivity, all those risks increased by deconditioning :Retro smile: diabetes, heart disease and so on.

Many of us have neurological damage which is unlikely to be reversible. Me is considered a primarily neurological disease, though neuroimmune is probably the best description of ME/CFS.

Medical breakthroughs may happen, but we are unlikely to ever have the health we would have had without ME/CFS.

Mithriel

I know but would it not be better to say as for as we yet know?

My english is not great so feel free to rephrase it.
 

Mithriel

Senior Member
Messages
690
Location
Scotland
As far as we know ME/CFS is permanent and lifelong. Research has given reasons why this should be and patient experience backs it up.

This is a very serious issue, because many people are refused benefits and pensions because the psyches claim that it is short term. People are even refused bus passes because it is not a permanent condition.

Any condition could have a breakthrough tomorrow that would cure them. They might discover how to remyelinate nerves to cure MS, but we can't penalize people on the basis of that.

It should be up to our oppressors to show that the damage to us is reversible. They just assume it is and we suffer the consequences.

How many years do we have to be ill before anyone believes we will always have it and are entitled to the things automatically given in diseases like MS?

Also, if we have a time limited disease then why bother putting money into research?

Mithriel
 

lansbergen

Senior Member
Messages
2,512
As far as we know ME/CFS is permanent and lifelong. Research has given reasons why this should be and patient experience backs it up.

This is a very serious issue, because many people are refused benefits and pensions because the psyches claim that it is short term. People are even refused bus passes because it is not a permanent condition.

Any condition could have a breakthrough tomorrow that would cure them. They might discover how to remyelinate nerves to cure MS, but we can't penalize people on the basis of that.

It should be up to our oppressors to show that the damage to us is reversible. They just assume it is and we suffer the consequences.

How many years do we have to be ill before anyone believes we will always have it and are entitled to the things automatically given in diseases like MS?

Also, if we have a time limited disease then why bother putting money into research?

Mithriel

Research is needed to find something that helps to make the sympthoms less severe.

I know retrovirusinfection is lifelong but I think that does not mean nothing can be done.

I know what a hard time patients have. I am from the Netherlands where is claimed ME does not excists and CFS can be cured by CBT/GET.

I do what I think is best for me to improve. CGT/GET is not part of it.
 

Dolphin

Senior Member
Messages
17,567
Off-topic

Charming, and one of the reasons this Brit left Ireland.
Just to say that phrase wasn't from me. I don't believe I have particular hang-ups about British people etc. My uncle is a dentist in Berkshire and he has four children around my age (boys 1 and 3 years older and grls, 1 and 3 years younger) and I went to their house for some of the summers and they did to my house when we were children (and also a bit less as teenagers). We're their only cousins so are quite close. I grew up watching a lot of BBC (RTE wasn't great back then and we didn't have much choice - a lot of people not on the east coast didn't have British stations then) and listened to a lot of BBC 5-live (so for phone-ins, one hear all sorts of views) until NewsTalk came to Ireland. Some Irish people can have stereotypes in their head.
 

Dolphin

Senior Member
Messages
17,567
Off-topic

Tom and Orla,

I would tell you I'm Irish but it's obvious from my name and I've been told by Irish not to tell them because "i'm Irish too" is always the first thing out of any American's mouth. :Retro smile:
Thanks for that, Justin. It irritated me a little for a while when I was younger (but not too much) but now I can understand it and it seems nice enough - I'd prefer people proud to say they were of Irish extraction than the opposite.
 

Dolphin

Senior Member
Messages
17,567
Who assumes that the pathophysiology of CFS is largely irreversible?

From not knowing and/or understanding the pathophysiology to assuming it is irreversible is a big step.
Yes, the phrase may not be the best. It usually isn't mentioned like that when mentioning pacing. One can simply say something like it doesn't make assumptions about what the underlying cause is or something like that. Other phrases have been used but can't think of the off the top of my head.
 

MEKoan

Senior Member
Messages
2,630
OT
Thanks for that, Justin. It irritated me a little for a while when I was younger (but not too much) but now I can understand it and it seems nice enough - I'd prefer people proud to say they were of Irish extraction than the opposite.

Those raised Irish in Ireland have no idea what it's like to be raised Irish in the diaspora. If your DNA and parents are Irish, you're irredeemably Irish. ;) There's nothing extracted about my Irishness, just ask my rosacea. I've been told by Anglo Irish immigrants to Canada that I'm not really Irish and that they are :worried: I tell them to close their door, if you please. When I tried, as a child, to claim I was English (the Beatles :innocent1: ) given I was born in London, my mother slapped that idea right out of my head :ashamed: And, there's just no trying to pass as Canadian in my heart. I wan't raised a bit like the kids around me. Thank God I live in a country of immigrants because that's the only identity that's ever felt right and the only group to which I feel I truly belong - the displaced.
 

jackie

Senior Member
Messages
591
OFF-TOPIC....(and i did swear i wouldn't do this again!)

First i hope i didn't offend anybody by carrying the pom jokes too far? (seriously, you all know i'd never intentionally do that)..but it was all so charmingly (as marco said) funny to me!

And as an unfortunate, who's never been able to leave the country i was born in, i find it intriquing listening to all our international experiences on this forum!

My paternal grandmothers people came from England, there were some Scots, of course, and the rest immigrated from Ireland to the United states about the time of the famine. They landed in Ellis Island...made their way to the West (i have a cut glass bowl that was hand carried, wrapped in a quilt, in a covered wagon as they made there way across the country - the story being that when the wagon bumped over bad ground - somebody had to get out and carry the bowl!)...settling in Wyoming to work in the mines.

My mother was a survivor of the 1918 Influenza Epidemic ("There was a little bird and her name was Enza...I opened the window and In Flu Enza"...a terrifying rhyme sung by children during this time). 13 people were living on their ranch at the time, and all died but my 18 mo. old mother, her young father and his mother...all else died without medical help in the same house (2 people buried the other 10). All that's left of most of that family now is my mother and her life-long immunity to that deadly strain of flu!

I found one lone Frenchman in our family history who bewilderdly found himself in an army camp suffering from Measles with hundreds of other soldiers during the CIVIL WAR! The old letter he wrote home (something along the lines of "Merde! Somebody get me outa here!")...was both heartbreaking and pretty funny as it appeared that he must have come for a short visit (talk about bad timing!) arrived smack in the middle of the war...and i guess was conscripted (against his will and better judgement!)

So i was raised by parents and grandparents who told me all the history they could, taught me to be proud to have roots in Ireland, Scotland and England (though there was some heated fighting now and then about who came from where!)...and i'll take any first hand stories of these places I've heard so much about - but will never get to see!
thanks....j (and now back to business!)
 

MEKoan

Senior Member
Messages
2,630
OT

Marco, it was I who raised the dreaded expression and no others. I apologize for any offence I may have caused. Please do not hold any accountable but me.

Sorry if I upset you.
Koan