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

[starryeyes]

Justin Wrote: To me, the crux of the matter is what Teej pointed out- to me the evidence indicates that CAA board and officers think everything is copacetic and there's no need for change.

Thank you. That is exactly what I am saying. I'd like to know if others here feel the same way or not. If you have a problem with what I'm saying tell me what it is and why.

 

[starryeyes]

Lily wrote: I believe as a group this forum could create a document listing the specific changes and expectations for the CAA, and submit it to them for their comment. As CBS said they are us.

Okay, let's do that.

 

[Lily]

Changing the CAA

This organization is not going to be able to change in the magnitude that we here would like to see without a new President/CEO. It’s not going to happen. It needs to be completely redesigned. There are certainly people here and on other boards that I believe have the intellectual capacity and experience to do that. And I truly hope that happens someday, regardless of what happens with the science. In the meantime, we should probably adjust our expectations.

Having the CAA here on the forum listening to us is a nice gesture, but as Roy S said it’s done all the time and is a well known mollifying tactic. I’ve employed it myself. That said, I believe we should continue to keep the dialog open, but not expect too much in the way of change through that method.

If we want to be taken seriously then I think we should get organized and draft a formal document as I mentioned in my earlier post. Island Finn suggested much the same with a way to go about it by:

……..start a new thread, titled something like "what we would like from the CAA". Everyone could contribute ideas, we could discuss them, and even have polls if need be. SOmeone eminently capable (like you??? [justinreilly] with help???) could be spearheading it- compiling lists, refining points, putting up polls.......... And we could perhaps even put timelines on things and/or prioritize them. And when we submit them to the CAA, we could do it from PR forum or we could attach a petition and individually indicate support.

[my bold]

I don’t believe we start by asking for the moon. Probably shorter than 100 pages would be a good idea

While we're doing that, I’d like to see us follow-up with Shane’s idea using Marc Iverson's resignation letter. Again I think it should be submitted as a formal request. It can be submitted online, but also in writing.

Dr. Yes,

A very timely and useful contribution (why am I not surprised). Perhaps it might be worth asking the CAA if they would care to comment on where the CAA stands today on each of the concerns expressed by Mr. Iverson, specifically the second and third concerns (I suspect they would be more than happy to answer item 3(7)).

Lily

 

[starryeyes]

Founder Marc Iverson's Letter to the CAA

I bolded what I think we want the CAA to focus on:

I almost missed Marc Iverson's letter as it was only linked to here; considering the speed of posting I thought it would be a good idea to reprint it in its entirety, so that more people get a chance to read it.

-------------------------------------------

Posted to Co-Cure Fri, 13 Jul 2001 17:13:18 -0400 by Ed Isenberg
Marc Iverson Resigns from Board of CFIDS Association of America

Marc Iverson (PWC, 22 years) was the Founder and, for its first 13 years, Chairman of The CFIDS Association of America....

Marc has asked me to make special mention of the fact that his resignation letter is copyrighted. While permission is granted to reprint it for any non-profit purpose, it must be in whole and without editing or excerpting, and must include the copyright notice as part of such reprinting. Marc was quite clear that, if necessary, he is prepared to take action to make sure his remarks are not altered in any way or taken out of context.


Formal Statement of Resignation from
The Board of Directors of
The CFIDS Association of America and
All Association Committees and Positions of Leadership

Marc M. Iverson, Founder
June 22, 2001

Fellow Directors of The CFIDS Association of America, I, Marc M. Iverson, hereby resign from the Board of Directors of The CFIDS Association of America, and all Association committees and positions of leadership, effective 8:00 a.m. EDT, June 22, 2001.

As the founder of The CFIDS Association of America, Chairman of the Board of Directors of the Association for 13 of its 14 years, a major donor and fundraiser for the Association, and the sole permanent member of the Association's Board of Directors, I have reached this decision with great difficulty and extensive contemplation, and only after lengthy discussions with the President and Chief Executive Officer (CEO) of the Association, K. Kimberly Kenney, for whom I continue to have professional respect and admiration.

There are five primary reasons for my resignation.

First, I am overwhelmed with family obligations and the struggle with my own health problems.

Second, I have a different vision for the Association, and different priorities for the allocation of Association resources, than the CEO. I favor aggressive/activist "PWC focused" strategies with the objective of providing the Association's constituency (persons with CFS/CFIDS and related disorders) with what it wants. In contrast, the CEO favors more conservative "mainstreaming" strategies intended to define and communicate CFS/CFIDS issues to the public (including the medical community, the media, and policy-makers) with the objective of making CFS/CFIDS a mainstream disorder.

Third, I hold a different position than the CEO with respect to certain critical Association policies and programs. For example:

(1) I favor and the CEO opposes immediately adopting a very aggressive stance opposing the discriminatory and incredibly damaging name CFS/CFIDS (chronic fatigue syndrome/chronic fatigue and immune dysfunction syndrome) and I believe efforts to change public attitudes are virtually hopeless and wasted with the present name;

(2) I favor and the CEO opposes directly providing a system that permits patients to exchange health care (physician) referrals;

(3) I favor and the CEO opposes immediately allocating resources to collect and disseminate far more information on treatment;

(4) I favor and the CEO opposes immediately revamping the Chronicle to make it more timely, accurate and informative;

(5) I favor and the CEO opposes allocating/raising resources to build a state-of-the-art fully interactive web site that serves as a real time "clearing house for information" thereby enabling PWCs and interested parties to exchange information and ideas in a safe and civil environment;

(6) I favor and the CEO opposes immediately developing specific, objectively measurable goals and benchmarks to measure the success or failure of all Association programs and the staff paid to implement them;

(7) I favor and the CEO opposes placing a much greater emphasis on raising funds for, initiating, and reporting CFS/CFIDS research; and,

(8) I favor and the CEO opposes gradually shifting resources away from programs not financially supported by Association donors, such as the Association's extensive lobbying efforts.

Fourth, I have been caught in a "moral dilemma" of defending major Association policies/actions with which I strongly disagree.

Fifth, I can not fulfill my responsibilities (as defined in the Association Bylaws and further outlined in the 2001 Association Operating Plan).

Fellow Directors, I believe I've made reasonable (if not extraordinary) efforts to state my case, but have been unable to persuade Ms. Kenney that the Association should drastically change. Ms. Kenney is the driving force behind the Association and, although major policies and plans must be approved by the Association's Board of Directors, Ms. Kenney (as CEO) and her professional staff are charged with the responsibilities of both developing and implementing the Association's policies and plans. Without Ms. Kenney's support, it is unrealistic to believe that the positions I advocate will be adopted by the Association's leadership or implemented. Accordingly, it is time for me to step aside.

I'm proud of what the Association has stood for and accomplished in the past. I wish you well individually and as an organization.

Marc Iverson

2001 Marc Iverson. Permission is granted to reproduce this statement in whole, without editing or abridgement, for any nonprofit purpose. This copyright notice must be included in any reproduction. All other rights reserved.

From http://www.co-cure.org/Iverson.htm

Well, our big beef right now is the SPARK! Continuing Medical Education program that promotes CBT and GET as effective strategies for ME/CFS and quoting the likes of Peter White.

So that's a difference from Marc because he probably was unaware of this program but one can see from Marc's letter that there is a lot of reason for PWC to be uphappy with the CAA and to feel that they have not been listening to us.

 

[starryeyes]

Roy, thank you for sharing your letter with us and for the link to the ME/CFS Knowledge CAA page

Justin wrote: I think we should get more of at least a statement of intention to change or a 'we're seriously looking at these X decisions because they may have merit.' Maybe there were statements made that I am not aware of (I have not read about 200 posts on this thread, for example).

I have read all of the posts on this thread and all of the others here on PR pertaining to the CAA, some of them many times and you have not missed anything. I agree that we need better feedback and action from the CAA.

 

[Dr. Yes]

I bolded what I think we want the CAA to focus on:



Well, our big beef right now is the SPARK! Continuing Medical Education program that promotes CBT and GET as effective strategies for ME/CFS and quoting the likes of Peter White. So that's a difference from Marc because he probably was unaware of this program but one can see from Marc's letter that there is a lot of reason for PWC to be uphappy with the CAA and we feel that they have not been listening to us.

Although the Spark literature is a very obvious problem, to focus on it alone as our biggest contention with the CAA would be a mistake; it should (and, I expect, will?) be removed at SOME point, but I think it's secondary to a larger set of problems which will remain even after its removal.

A major one is the emphasis (hopefully diminishing, but still present) on behavioral therapies for CFS/ME in CAA literature. Admittedly, this is not exclusive to the CAA; a few (FEW) of the prominent doctors they refer to - esp. Nancy Klimas - feel that what they by blurry semantics call CBT can be helpful for many PWC (and a couple like Klimas promote exercise far more than most others). At least as many, and most likely more, doctors and researchers specializing in ME/CFS feel that such recommendations are contraindicated, however, in a majority of patients. The CAA can and should evaluate the research findings on the physiological effects of exercise - and lack of efficacy of "CBT" - independently of a few doctors, who may not be seeing the more severe patients in high numbers to begin with. Given this, and the ideological climate that most of us face from the medical community and the rest of the real world, and the powerful politics that shape it, the CAA should end its promotion of CBT and of graded activity. These issues have been discussed in great detail in a thread started by Shane (which I hope he can link to; it's buried) and in others, such as the CAA Pamphlet thread.

The issue of why the Howard article, with its explicit argument that ME/CFS patients have specific false illness beliefs and a psychological causation for their symptoms (not to mention Howard's website that goes further) was actually considered appropriate for publication by the CAA has not been addressed, to my understanding, despite their removal of the article (after protest on this forum). This means we are left with the impression that their may be an acceptance of this kind of un-scientific ideology by some in the CAA, which of course would be absolutely unacceptable! (This impression is of course fueled by the concerns over CBT/GET endorsement mentioned above.)

To me and to many others a key issue is what has been brought up on - I believe - the 'CAA is Listening' thread: does the CAA represent only a higher functioning population of ME/CFS patients, to the relative or complete exclusion of lower functioning ones? Their literature and advocacy efforts do indeed reflect this. These points have been raised elsewhere, too, by me and many others. Focusing more on the most severely affected can only be beneficial to all PWC. And focusing on the economic struggles of PWC, and real world assistance that they require, is something the CAA must do far, far more than they have been doing.

These are just a couple of the major issues the CAA badly needs to improve upon to become an effective advocacy group for all PWC. Perhaps a fresh thread to list our suggestions is a good idea, though they are all here, on the CAA-topic threads, for
anyone to read. But a condensation of them may be helpful to all of us due to the length of these threads.

I unfortunately have to agree with Marc Iverson's previous assessment, and with others who have posted here, that the changes needed in the CAA will be very difficult with the existing leadership. While I am encouraged by the recent research initiatives that the CAA has undertaken, there is so much more that they could be doing that is really necessary -- and without breaking the bank, so to speak.

 

[justinreilly]

CAA Must Do What Patients Want, Not What Officers and Directors Want

CAA staff are directed by officers; officers serve at the pleasure and direction of the board; the board serves the organization; the organization serves the patients. Period.

Everything done at CAA must- commonsensically, morally and legally- ultimately be done to serve ME patients.

There is a lot to be said for the expertise of officers and board members. However, an indispensable part of serving patients is listening to us and working toward the goals we set using the tactics and strategies we want.
This can be tempered by, but not substantially substituted by, the expertise of the board and officers.

CAA has lost some of its direction and core purpose by not having every action be in service of patients.

 

[leelaplay]

hi all - I'm barely here, but just wanted to say a few words.

Love that a list is starting to emerge. I know many of the ideas are here in this thread, but it's so long, most of us can't read it all, and many of those who have can't remember most of it :Retro redface:

I think tee, dr yes, & jr have great points so far + CBS's re asking where they stand on Mark Iverson's letter today.(sorry - can't look back for more than 10 posts to see who else). Also, Cort had a good list of what he thinks they need to do/change. I'm all for coming up with a list that is prioritized and/or has timelines & maybe some method of communication over it. And Justin - if nothing, or not enough, gets met - then I vote with my dollars (ie save the big stick to wave it around a bit).

I think it was wilddaisy who mentioned Khaly. I'd completely forgotten about that. (another :Retro redface Do we know what exactly she brought to the CAA and what happened? It might be good to follow that up.

I'm really sorry that I can't volunteer to start a new thread and start collating this, summarizing points every so often for feedback & clarity..............I really like the idea of bringing some type of formal presentation of the needs of the patients on this list and what we think we need the CAA to be doing for us. Maybe even a presentation at a board meeting. And some type of formal response/dialogue mechanism. But I can't right now. So I don't want to get too carried away describing what I hope someone else will do. This will have to be lead by people who are capable of doing so. Unfortunately, that's not me right now.


ps - justin - are you melting?

 

[Hope123]

I thought I'd repost this here since I had mentioned previously to Jspotila that CAA consider doing a survey about CBT/GET of current members. Tomk pulled out results from a 1999 CFIDS survey and here are some results. About a 1/3 of folks felt that GET was harmful, 1/4 felt it helped moderately, and 1/3 felt it helped a little. Having a 1/3 of people feel that GET was harmful on the CAA's own survey makes it imperative that cautions be strongly place; if any intervention harmed 1/3 of those who underwent it, patients, the government, and healthcare staff should know about it and some might not prescribe it at all.

From Tomk:

Survey 10: (US) The CFIDS Association of America 1999 Reader Survey
The largest survey of ME/CFS patients that I am aware of in the US was published by the the CFIDS Association of America in 1999 (questionnaires were also distributed that year).
I can send a copy of the page of results of 28 therapies on request. Unfortunately, I do not have time to type in all the results at present.
820 readers filled in the questionnaire.

The results for Graded Exercise Therapy were:
462 respondents
Helped a lot: 111 (24.0%)
Helped a little: 170 (36.8%)
No effect: 51 (11.0%)
Harmful: 130 (28.1%).

Numerically this was the highest rate of adverse reactions.

Numerically the second highest rate of adverse reactions was reported for antidepressants:
Antidepressants
539 respondents
Helped a lot: 163 (30.2%)
Helped a little: 154 (28.6%)
No effect: 104 (19.3%)
Harmful: 118 (21.9%).
In terms of percentages, Graded Exercise Therapy had the third highest rate of adverse reactions.

Two treatments, Beta-blockers and colonics, which I think the CDC is unlikely to recommend, were marginally higher:
Beta-blockers
172 respondents
Helped a lot: 33 (19.1%)
Helped a little: 39 (22.7%)
No effect: 45 (26.2%)
Harmful: 55 (32.0%).

Colonics
131 respondents
Helped a lot: 14 (10.7%)
Helped a little: 38 (29.0%)
No effect: 42 (32.1%)
Harmful: 37 (28.2%).

CBT had a lower rate of adverse reactions compared to the rates seen in other surveys. This may be because CBT in the US currently simply based on GET – there are different forms offered some which might encourage the pacing of activities. However this might change if information from the form of CBT that tends to be used in the UK and the Netherlands is highlighted by the CDC.

CBT
160 respondents
Helped a lot: 48 (30.0%)
Helped a little: 60 (37.5%)
No effect: 38 (23.8%)
Harmful: 16 (10.0%).

The treatment with the best results was Pacing of activities. It had the lowest rate of adverse reactions (1/601 or 0.2%) and the highest helpful percentage (i.e. the sum of the percentages for helped a little and helped a lot)
Pacing
601 respondents
Helped a lot: 423 (70.4%)
Helped a little: 167 (27.8%)
No effect: 20 (3.3%)
Harmful: 1 (0.2%).
==================

 

[Dolphin]

I thought I'd repost this here since I had mentioned previously to Jspotila that CAA consider doing a survey about CBT/GET of current members. Tomk pulled out results from a 1999 CFIDS survey and here are some results. About a 1/3 of folks felt that GET was harmful, 1/4 felt it helped moderately, and 1/3 felt it helped a little. Having a 1/3 of people feel that GET was harmful on the CAA's own survey makes it imperative that cautions be strongly place; if any intervention harmed 1/3 of those who underwent it, patients, the government, and healthcare staff should know about it and some might not prescribe it at all.

Also what is happening more in the UK and possibly in other countries (it is to an extent in Ireland) is that pressure is being put on patients to do GET and/or CBT based on GET before they will get disability payments or disability pensions from insurance companies.

Normally if an intervention (e.g. surgery) had such high rates of adverse reactions, patients would have freedom to choose not to undergo it. But because "it's only exercise" and "exercise is good for you" (these aren't exact quotes, just paraphrasing thinking) along with the "evidence" for CFS specifically, choice is being taken away.

Also patients can be seen as "non-compliant" if they don't finish the exercise programs.

Information on 10 other surveys can also be found at: http://sacfs.asn.au/news/2009/09/09_20_adverse_reactions_to_get.htm (i.e. 11 in total if one includes the one I highlighted in the comments).

------
Having the message out there that more exercise or more activity is good for patients can mean they might not get the other supports they might like. One can see Peter White/Barts CFS/CF service showing their approach in item (i) at: http://www.forums.aboutmecfs.org/sh...into-their-views&p=23744&viewfull=1#post23744 . Such attitudes can even influence family members.

 

[Dolphin]

Although the Spark literature is a very obvious problem, to focus on it alone as our biggest contention with the CAA would be a mistake; it should (and, I expect, will?) be removed at SOME point, but I think it's secondary to a larger set of problems which will remain even after its removal.

A major one is the emphasis (hopefully diminishing, but still present) on behavioral therapies for CFS/ME in CAA literature. Admittedly, this is not exclusive to the CAA; a few (FEW) of the prominent doctors they refer to - esp. Nancy Klimas - feel that what they by blurry semantics call CBT can be helpful for many PWC (and a couple like Klimas promote exercise far more than most others). At least as many, and most likely more, doctors and researchers specializing in ME/CFS feel that such recommendations are contraindicated, however, in a majority of patients. The CAA can and should evaluate the research findings on the physiological effects of exercise - and lack of efficacy of "CBT" - independently of a few doctors, who may not be seeing the more severe patients in high numbers to begin with. Given this, and the ideological climate that most of us face from the medical community and the rest of the real world, and the powerful politics that shape it, the CAA should end its promotion of CBT and of graded activity. These issues have been discussed in great detail in a thread started by Shane (which I hope he can link to; it's buried) and in others, such as the CAA Pamphlet thread.

The issue of why the Howard article, with its explicit argument that ME/CFS patients have specific false illness beliefs and a psychological causation for their symptoms (not to mention Howard's website that goes further) was actually considered appropriate for publication by the CAA has not been addressed, to my understanding, despite their removal of the article (after protest on this forum). This means we are left with the impression that their may be an acceptance of this kind of un-scientific ideology by some in the CAA, which of course would be absolutely unacceptable! (This impression is of course fueled by the concerns over CBT/GET endorsement mentioned above.)

To me and to many others a key issue is what has been brought up on - I believe - the 'CAA is Listening' thread: does the CAA represent only a higher functioning population of ME/CFS patients, to the relative or complete exclusion of lower functioning ones? Their literature and advocacy efforts do indeed reflect this. These points have been raised elsewhere, too, by me and many others. Focusing more on the most severely affected can only be beneficial to all PWC. And focusing on the economic struggles of PWC, and real world assistance that they require, is something the CAA must do far, far more than they have been doing.

These are just a couple of the major issues the CAA badly needs to improve upon to become an effective advocacy group for all PWC. Perhaps a fresh thread to list our suggestions is a good idea, though they are all here, on the CAA-topic threads, for
anyone to read. But a condensation of them may be helpful to all of us due to the length of these threads.

I unfortunately have to agree with Marc Iverson's previous assessment, and with others who have posted here, that the changes needed in the CAA will be very difficult with the existing leadership. While I am encouraged by the recent research initiatives that the CAA has undertaken, there is so much more that they could be doing that is really necessary -- and without breaking the bank, so to speak.

If they or anybody else wants a reason not to mention CBT based on GET, they could point to the following NIH-funded study:

Jason, L.A., Torres-Harding, S., Friedberg, F., Corradi, K., Njoku, M.G., Donalek, J., Reynolds, N., Brown, M., Weitner, B.B., Rademaker, A., & Papernik, M. (2007). Non-pharmacologic interventions for CFS: A randomized trial. Journal of Clinical Psychology in Medical Settings, 14, 275-296.

The intervention based on pacing came out best.

 

[silicon]

Hope, Tomk,

Thanks for posting these survey results. I would think (and hope) that such survey results would carry some influence in medical circles, and the CAA, since they conducted one of the surveys! I guess the CBT and/or GET proponents find ways to discount such surveys, and emphasize their current research instead

 

[usedtobeperkytina]

If we could just use different terminology.

Replace CBT with "professional counseling to learn to cope with having chronic illness."

Replace GET with "pacing, meaning the patient alternates complete rest periods and some body or mental activity during the day based on the level of illness the patient is experiencing. If the patient is largely bed bound, then stretching in bed for as little as five minutes would be a suggested starting point. The recommendation is to rest for three times the amount of time of activity after the activity. In this case, it would be 15 minutes. Because of the sensitive CNS in CFS patients, the rest periods, to be most effective, should be supine with no sensory input. Cycling the alternating periods of rest and mental and physical activity during the day has been shown in many CFS patients, not all, to produce improvement in their condition over time.

"Most CFS patients end up exacerbating their symptoms by doing too much activity in times that their symptoms are less, which leads to a return of debilitating symptoms within 48 hours. This can sometimes lead to a "push and crash" cycle which is damaging to the long-term prospect of recovery. Care should be given, then, that the patient stops activity before they feel fatigue from the activity.

"If the patient is at a higher functioning level, she can start with short periods of walking or swimming, always resting afterward, following the protocol of pacing activity. Until a patient has recovered, aerobic or weight lifting exercise is not recommended and may even cause a relapse after the patient has recovered."

Notice, I have replaced exercise with "body activity" for the severely ill.

Much of the problems here are the semantics.

Tina

 

[Dolphin]

Hope, Tomk,

Thanks for posting these survey results. I would think (and hope) that such survey results would carry some influence in medical circles, and the CAA, since they conducted one of the surveys! I guess the CBT and/or GET proponents find ways to discount such surveys, and emphasize their current research instead…

Some people certainly try to dismiss surveys and say only clinical trials are relevant.

But the thing is that adverse reactions to interventions (e.g. drugs, surgery, etc) are relevant even after a drug (or whatever) has appeared to be safe in clinical trials. I don't see why ME/CFS patients should accept anything less - we shouldn't be treated as second-class citizens where harming us is ok.

The issue would probably have been picked up if the reporting scheme for adverse reactions covered such interventions. There are systems where doctors (and in some countries also patients) can report adverse reactions to drugs but for GET, we don't have that.

 

[Dolphin]

If Replace CBT with "professional counseling to learn to cope with having chronic illness."

Yes, that's the way it is spun. But CBT is something quite different from counselling (although some therapists, particularly private ones, may use elements of both with the one patient).

I think elsewhere on the site Orla has explained why CBT and counselling are very different. I know Ellen Goudsmit (a psychologist) for one also says it is factually very incorrect to say CBT is a form of counselling.

 

[Dr. Yes]

I agree with Tom above.. it's not just a matter of semantics. And I would add that similarly, there is a world of difference between 'graded' exercise and 'pacing' in the original sense -- the term 'pacing', by the way, is itself slowly being co-opted by some of those who used to push GET but they are changing the definition, as usual, in this case making it more like GET.

The core principle of GET is a gradual but fairly steady increase in activity levels (some are less hard-line about the steadiness than others, but the goal is the same). This simply discounts the reality that the vast majority of ME/CFS patients have an 'activity ceiling' beyond which they cannot continue to increase levels, and that at any time they might experience relapses or other setbacks and cannot return swiftly to the previous activity level. Further, it ignores the physiological risks associated with physical exertion in ME/CFS, which can be more insidious than a mere single-event push-crash phenomenon; rather, it appears that it can also be the result of cumulative, sustained activity over time, even if daily effects are hardly noticeable for some time.

CAA and other literature have indeed over time substituted the term 'activity' for 'exercise', but the concept of graded or gradual increase is almost invariably attached.

Pacing, especially as related to 'Envelope Theory', does not call for gradual increase in activity levels. But, as I mentioned above, some spins on the pacing concept do incorporate the idea of graded increase, making it in effect a kind of "GET Lite".

I strongly advise that the only behavioral therapy recommended at all in CAA literature be standard supportive counseling, as would be recommended to anyone dealing with a severely disabling, life-altering chronic illness or injury. That is, after all, exactly what we have, is it not? As for activity, the focus should be on Envelope Theory, pacing within that context, and an emphasis on the hazards of graded exercise/activity regimens (rather than promotion of them). Then, instead of a postscript about the potential risks of exercise in more severe patients, there could be a postscript about the potential benefits of carefully monitored exercise in less severe patients. A general encouragement to remain as active as is safely possible within one's "energy envelope" at any given time in order to maximize health and avoid deconditioning would of course be appropriate (with the mention of potential risks even here for the most severely ill patients, of course).

 

[starryeyes]

IF wrote: ps - justin - are you melting?

lmao!! :tear:

 

[justinreilly]

ps - justin - are you melting?

Due to rude comments about my appearance, I have posted a formal photo of myself at my most suave-ay and sophisticay-tay.

 

[jspotila]

Much of the problems here are the semantics.

Tina

Or that the defintions of CBT and GET in the abstract, and application of those methods in real life by doctors who truly understand CFS, and application of those methods in real life by doctors who do NOT truly understand CFS, and mention of these methods in the media, and what people hear when those terms are used - that none of these are in alignment. There is a world of difference between "CBT and GET are all you need" and "There is no treatment for CFS; the best that can be done to ameliorate the illness in some people is CBT and GET." And of course, even if the terms are replaced or better defined, there is NO treatment that helps ALL people with CFS, or even the same person with CFS at different points in time.

I don't know if that is semantics or not, but this is what I understand Tina to be saying.

 

[Dr. Yes]

Hi Jennie,

Or that the defintions of CBT and GET in the abstract, and application of those methods in real life by doctors who truly understand CFS, and application of those methods in real life by doctors who do NOT truly understand CFS, and mention of these methods in the media, and what people hear when those terms are used - that none of these are in alignment. There is a world of difference between "CBT and GET are all you need" and "There is no treatment for CFS; the best that can be done to ameliorate the illness in some people is CBT and GET." And of course, even if the terms are replaced or better defined, there is NO treatment that helps ALL people with CFS, or even the same person with CFS at different points in time.

I don't know if that is semantics or not, but this is what I understand Tina to be saying.

It is very true that the interpretation of terms like CBT and GET (as well, more recently, as pacing) unfortunately varies and has been greatly distorted by many -- often intentionally, to suit a differing belief (not a scientifically valid paradigm) about the aetiology of ME/CFS. As I have stated before, this distortion has allowed CBT/GET to become a key entry point into ME/CFS treatment for proponents of (unscientific) psychosomatic speculations, and the term CBT in particular has lost much of its original meaning and semantic context. Politics and bad science have rendered it a deceptive and therefore harmful term and concept for people with ME/CFS. As a practical measure, the term needs to be abandoned in general and by the CAA in particular. A new, concisely defined term that cuts through the distortion would be an appropriate replacement, IF it has shown truly significant positive effects in patients in scientifically valid trials (where "CBT", whatever that term means on most days, is clearly on shaky ground). At this point the only such therapy is supportive counciling, as I mentioned in my previous post. This argument has been made repeatedly, by many people, throughout this forum.

As for the GET issue, I ask you to re-read my last post, to begin with. The semantics issue is far less a problem with GET, and I have defined both it and its common mutations, pointing out the underlying theme of consistently increasing activity, which is an inherently flawed approach for most PWC. In other words, it doesn't matter how you alter the definition; the core idea will not work for many of us, and it is dangerous to promote this as any sort of therapy, let alone a 'treatment', given (1) the evidence for exercise-induced pathophysiology in ME/CFS patients, (2) the unacceptably high rate of negative responses to GET (patients reporting it actually harmful) in various surveys, (3) the poor scientific quality of many of the studies that have found favor with GET, and (4) the very high likelihood of poor interpretation or implementation of such activity programs by an unacceptable number of practitioners (as you correctly noted), despite all the warning labels in the world on CAA literature about GET.

The responsible thing for the CAA to do, as I and others have argued, is to stop promoting CBT or GET in any way. (Especially GET, or CBT with a GET component, as it usually has.) Supportive counciling can, if the therapist and patient agree upon it, use techniques common to cognitive therapy or even CBT (which was derived from cognitive therapy), without a preconception that a patient has false illness beliefs, and without employing any GET or similar activity program (I do not consider 'pacing', as was once defined, to be a form of GET, but as I said there are significant efforts to improperly redefine it).

Lastly, I really want to make clear that CBT and GET are frequently labeled as 'treatments' in an unqualified manner that is highly confusing, especially to medical practitioners. 'Treatment' by itself suggests to many doctors a modality aimed at the underlying cause of the disease, rather than a supportive therapy aimed at reducing its overall impact on quality of life. The only sense in which the word can be applied to CBT or GET is as symptomatic treatment, i.e. therapy that eases the symptoms without addressing the basic cause of a disease. Even this would be a questionable use of the word, as CBT and GET at BEST only address a few of the symptoms of ME/CFS but cannot help many others (and indeed may worsen them, in the case of GET).