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

[jspotila]

Jennie-

If I want to contact the board or a member by email, what would you suggest? Should I email CAA and ask them to forward it on?

Yep! Email to cfids@cfids.org and put "For the Board of Directors" or similar in your subject line.

 

[justinreilly]

Thanks very much Starlight and also justinreilly.

If you are referring to the latest Staci Stevens paper I referred to, it's briefly discussed here: http://www.forums.aboutmecfs.org/sh...l-for-Physical-Therapist-Management-of-CFS-ME

The reason I wasn't definite if it has changed or not is that I can't see any times mentioned in the previous version in the Jason et al. (2007) paper (abstract in above link) but in the latest paper, they appear to be shorter than anyone I've heard mention times before which makes me things there has been a change:

From latest paper:

Exercise Interventions

Exercise interventions for people
with CFS/ME must be carefully customized
to reflect the unique needs
of each individual. The existing literature
mentions 2 critical issues in
prescribing physical activity for people
with CFS/ME. First, clear communication
between the individual and
the physical therapist about the effects
of the exercise program is critical
to avoid the perception that
physical activity has been increased
because of increased physical capacity
instead of the self-fulfilling prophecy
associated with starting an exercise
program. Second, aerobic system
impairments associated with CFS/ME
result in functional impairments that
may not be amenable to training in
people with CFS/ME compared with
people who are sedentary.

We assert that exercise interventions
for people with CFS/ME require a
combination of compensation and
rehabilitation approaches to physical
training in which training begins with
activities that provide stress to the
unimpaired anaerobic energy system
before the impaired aerobic energy
system is stressed. Therefore, we advocate
a training approach in which
initial therapeutic activities are short
duration, low intensity, and directed
toward specific contributing impairments
in body structures and functions.
Because oxidative phosphorylation
serves as the primary metabolic
pathway in activities lasting longer
than 2 minutes (Fig. 2), aerobic sys-
tem impairments in people with
CS/ME would seem to limit activities
longer than 2 minutes because of the
risk of developing symptoms and functional
deficits associated with PEM.

Therefore, we recommend therapeutic
activities that last less than 2
minutes and are conducted at an intensity
consistent with an HR that is
10% below the HR at the AT or RPEs
below 13 to 15. Previous studies
demonstrated that reducing exercise
time and intensity is effective in reducing
symptoms of PEM in people
with CFS/ME.60 These recommendations
regarding duration and intensity
are flexible; clinicians should be
guided by the individual’s immediate
and latent responses to therapeutic
activities to determine appropriate
exercise volume.

We recommend that activities initially
consist of stretching and activerange-
of-motion (AROM) exercises
to improve region-specific strength
and flexibility, because deficits in
strength and flexibility may be the
source of increased energy expenditure
through suboptimal movement
mechanics. The specific exercises incorporated
into the flexibility and
AROM program depend on the clinician’s
thorough examination and
evaluation of potentially contributing
pathomechanics. After participating in
a stretching and AROM program that
does not reproduce symptoms of
PEM, people may advance to strength
training in which the focus is on shortduration,
low-intensity strengthening
with maintenance of adequate rest intervals.
Clinicians should use caution
during the creation and progression of
the resistance training program because
the safety and effectiveness of
these interventions in people with
CFS/ME require additional research.
Finally, people with CFS/ME may advance
to short-duration, low-intensity
interval training. As starting criteria,
the duration of the intervals should
not exceed 2 minutes, and the intensity
should not exceed an HR that is
10% below the HR at the AT. Progression
of interval training should involve
increasing the number and intensity
of intervals while maintaining
a training range that prevents excessive
use of the impaired aerobic system
in people with CFS/ME. Interval
training should involve functional retraining
whenever possible, according
to the physical therapist’s evaluation
of the individual’s disablement. When
short-duration interval training can
be completed successfully, clinicians
should consider initiating shortduration
aerobic interval training,
which can be advanced in an incremental
manner according to people’s
symptoms, as described elsewhere.39

Despite the importance of exercise
to address physical conditioning in
some people with CFS/ME, the healthrelated
quality of life of people with
CFS/ME is only weakly correlated
with exercise capacity measurements.
This fact underlines the importance
of multimodal treatment, including
individual education and pacing selfmanagement,
to address the activity
and participation limitations in people
with CFS/ME.

From this latest paper and what else I have read from Staci Stevens, I don't think she has a good grasp of exercise in ME/CFIDS. It is better than what you read from the Wessely school, but that falls into the range of malpractice. I am a bit miffed from reading that one of the top docs, I think it was David Bell, strongly recommended her. Perhaps there is something I am missing or maybe the program in practice is less harmful than this advice appears to me.

For example, what makes her think that anaerobic metabolism is unimpaired and that lack of flexibility is perhaps the reason for reduced exercise capacity? Reduced flexibility is a problem, but not the most important one. Muscle pathology including mitochondrial dysfunction is the main problem.

This quote, if I am reading it correctly, seems to underline her failure to fully grasp the science and clinical wisdom:

Despite the importance of exercise
to address physical conditioning in
some people with CFS/ME, the healthrelated
quality of life of people with
CFS/ME is only weakly correlated
with exercise capacity measurements.
This fact underlines the importance
of multimodal treatment, including
individual education and pacing selfmanagement,
to address the activity
and participation limitations in people
with CFS/ME.

She seems to be saying, 'Despite the fact that exercise is important in ME, the science says it's not, so don't focus on it.' I would endorse only the second part of this contradictory (appearing to me) statement.

 

[Dolphin]

From this latest paper and what else I have read from Staci Stevens, I don't think she has a good grasp of exercise in ME/CFIDS. It is better than what you read from the Wessely school, but that falls into the range of malpractice. I am a bit miffed from reading that one of the top docs, I think it was David Bell, strongly recommended her. Perhaps there is something I am missing or maybe the program in practice is less harmful than this advice appears to me.

For example, what makes her think that anaerobic metabolism is unimpaired and that lack of flexibility is perhaps the reason for reduced exercise capacity? Reduced flexibility is a problem, but not the most important one. Muscle pathology including mitochondrial dysfunction is the main problem.

This quote, if I am reading it correctly, seems to underline her failure to fully grasp the science and clinical wisdom:



She seems to be saying, 'Despite the fact that exercise is important in ME, the science says it's not, so don't focus on it.' I would endorse only the second part of this contradictory (appearing to me) statement.

Firstly, in case there Is any doubt, me posting that information shouldn't be seen as a recommendation.

I think Staci Stevens and the Pacific Group, like the Utah group (the Lights and Lucinda Bateman) and the Nijs research group in Belgium, have published very interesting research on exercise abnormalities.

But like you, I have my doubts about her (and I have my doubts about recommendations those two other groups come up with also).

If it was generally accepted by society that exercise wasn't the answer, what they say could be a useful contribution to the debate.

But I fear, it often just ends up as doctors and others feeling exercise is a big part of the answer but patients may have to play around with it till they find the way that will give them improvements.

And of course, it's not generally accepted that exercise can be dangerous and/or patients might simply want to use their energy in other ways.

 

[Cort]

- Justin - The CME should start with the CCC and add in passages from the present CAA (currently non-credit) CME that are accurate or modified for accuracy. CAA should do this or at least coordinate it. It's too much to ask us to do alone. A competent editor and contributors could draft it and then submit it to Lapp and Batemen for approval. Then CAA needs to get credit approval for it and renew the approval.

This is another nice-sounding idea that one wonders how you can disagree with. But the world is not so simple. The fact is that the CCC has been to my knowledge been used in one out of the thousands research studies done on chronic fatigue syndrome which means you can't relate any of the research done on CFS to it - which means if you replace the 1994 criteria with it you're talking absolute blarney to the research community.

The CCC is also not a research definition - its a clinical definition. It could be turned into one and that may be happening with the IACFS/ME. Before anyone goes lapdog happy with IACFS/ME the only reason for that is that Hemispherx is giving them money to come up with a new research definition. The IACFS/ME is our professional organization - it should be the one to be doing that.

The CAA can support the Canadian consensus criteria and I agree that they should do that more. I think they should strongly advocate for its adoption as the clinical definition of chronic fatigue syndrome. Hopefully the IACFS/ME will create a new research definition that is modeled on the CCC. The CAA has had Dr. Jason write about it before and they are giving him an excellent platform to do so tomorrow.

 

[Cort]

The CME credits for the 'new' CAA CME programme have expired. But take heart, the CDC renewed the CME credits for its course authored by Reeves, Jones, McCleary, et al. through 2012. No physician is going to do a CME for no credit so doctors are back to studying the old POS.

I assume that CAA is able to get it renewed as CDC did theirs (and you can do this for law CLEs) and is just out to lunch as usual. Is it appropriate that we have to babysit someone paid $187K to help us?

Is there anyway you can drop the snarky tone? Your assumptions are wrong. The CDC puts their own program on their own website - they simply have to keep it running; the CAA, on the other hand, has to pay a substantial amount - from what I've heard - to keep the program on Medscape website. I agree that they should do what they can to keep it current.

I think you assume that you know too much Justin. You may not agree with Kim McCleary's decisions but if you've ever talked with her you can tell she's a very smart woman who doesn't need you to 'babysit' her. She is extremely well-versed in the research side of chronic fatigue syndrome. I would do a lot better with your criticisms if you could couch them in a less demeaning manner.Speaking in such a belittling manner that does two things; one, it can provoke a similar response (probably from me ) and two, it doesn't give the issues complexity the justice due to them. Some people think I'm a shill for the CAA or blind to their faults - I think I've shown that that's not true - but what I've really protested at are demeaning comments like that.

 

[Cort]

From what I know of her, I am impressed with her. I have trouble believing she or Dr. Lapp wrote this, it was probably another author. If they have their names on it though, I think that Dr. Bateman and Dr. Lapp should have looked it over and approved it prior to publication.

My point was we can't have blind faith in the 'experts'. This is lesson one in the story of ME/CFIDS. If you know something is wrong or harmful, don't publish it even if it was written by an expert.

Again, I think you're assuming more than you should. For one you're assuming the CFIDS Association authors wrote the section on kinesophobia - which you obviously can't do. For another you're assuming that both doctors - two professionals - would put considerable time into creating a document and put their name on it and then not check it out before it went to print. That would be remarkably sloppy and unprofessional of them - wouldn't you agree? The best explanation for why it's there is that somebody put it in there and everybody agreed on it or at least no one can disagree strongly enough to get it removed.

I don't think your expert analogy holds for very well. Dr. Bateman and Dr. Lapp - both of whom have won the respect of CFS patients and their peers for years - are not in the category of people like Dr. Wessely or Dr. White who are considered experts by the UK government - but who do not have mainstream views within the CFS research community. That is not 'blind faith' - its a recognition that if they say something then I should think about it considering their past performance - which is exceptional.

 

[Cort]

Kinesophobia

My question with regard to kinesophobia or behavioral therapies or anything like that is do you think ME/CFS patients are human beings?

That's a serious question. Do you think ME/CFS patients are, by and large, normal human beings or do you think that somehow this disease plucked out a superhuman subset of humans who are immune to all of the missteps and mistakes that the general trend of humanity makes when faced with any really difficult situation?

I think people with ME/CFS were probably normal human beings some of whom, when faced with such a difficult situation probably make errors of judgment. I know I sure have. The army doesn't throw recruits in the middle of a battle without extensively retraining them first. Nobody trained any of us in how to deal with a completely life altering situation. People are going to make mistakes suggesting that we aren't going to do that is, to me, untenable.

Therefore, if its Dr. Lapp and Dr. Bateman experience that some patients have a kinesophobia then I'm not surprised! I would suspect some people to develop that. Most of the times in my journey through CFS I've overdone it physically but there have been times I have definitely under done it on the activity front and it really did me temporary harm. Juggling activity levels is not an easy process after all, the nature of this illness - with the sometimes postponed reaction to exercise, makes it difficult, sometimes, to figure out what is causing what.

After reading the CME I think doctors will look at this illness from all angles. The kinesophobia section is one small section of the document that only applies to one set of patients. While patients may not get that I think doctors understand that it's probably a normal reaction that some people will have and that it is to be expected.

 

[CBS]

An additional comment on the falacy of simply denying that an expert like Bateman or Lapp or Klimas could have written a statement. I have spoken one on one with a number of top CSF researchers and one of the things that stands out is that to a person, they are all willing to state that there is much that they don't know. That degree of humility while trying to help their patients in very difficult situations is impressive and hard earned.

Making a recommendation based upon what you believe is in your patients' best interests when so many questions remain is always fraught with the danger of being second guessed. Making a recommendation to doctors with little background is CFS exponentially more so.

We all have our own experiences and we are passionate about what we "know" and yet we cannot state with confidence which aspects of our own experience are shared across the population of CFS patients.

The CFS doctors that I know are not arrogant, to a person they have been humbled by this illness. A like minded approach in addressing 'missteps' in recommendations (so as not to make yet another misstep in a different direction - and yes, I think that for myself there have been periods when being slightly more active has made me more resilient down the road - but that's just my interpretation) is far less likely to be dismissed as simplistic and uninformed by those with a much broader (but perhaps not as deep - at least as a long time CFS patient's) exposure to CFS.

 

[Cort]

I just added this to my already huge to-do list: Write CAA and get list of doctors who have received the Spark! brochures and flawed CME materials.

Next time I'm seeking a new doctor, I'll have to check the list and avoid anyone who's been educated by the CAA about ME/CFS. Any doctor who has read the materials in question is going to have false beliefs about me, why I'm sick, and how much I can do. Those beliefs won't be based on physiological reality.

Soon a new organization would spring up that's more responsive to the wishes of its constituency, as Marc Iverson called us in his resignation letter.

In the meantime, it would be better to have no physician education program than the one propagated by CAA.

Are you talking about the CME Course or the Sparks Course?

Believe me, there's no evidence that anything is going to spring up quickly in the advocacy area for CFS in the US.

I understand your concern about SPARKS. If it helps at all - it was reported, as I remember, that more doctors went through the Medscape CME course over the first couple months than ever did the CDC.

 

[Cort]

From Justin

Mark [Iverson]also told me [in 1989] that he originally wanted to name their group the Myalgic Encephalomyelitis Association, but that he was outvoted.

Here's there's another eye-opening fact for you Justin. The Board of the Fair Name Change Campaign for CFS (Dr. Klimas, Dr. Cheney, Dr. Bateman, Dr. Komaroff, Dr. Jason, Rich Carson, etc) unanimously voted not to have myalgic encephalomyelitis as the name for CFS in 2008 I think it was.

..

 

[Cort]

I

1) Put the maximum possible pressure on CDC to appoint an outside expert as the new Chronic Viral Diseases Branch Chief. Someone such as Nancy Klimas, Leonard Jason, Paul Cheney, Dan Peterson, etc. An ostensibly well-meaning CDC insider is not acceptable in view of CDC's long sordid history re: ME. This is a very rare opportunity to make a huge difference in the federal response for years to come. An outside expert running the show could well lead to a cascade effect of increasing medical and social progress.

Why would you think that they're not? They did more to bring down Dr. Reeve's than any other organization. They called for a total revamping of the CFS program. Why would you think they're not committed to someone like Dr. Klimas. I think that's very unlikely the CDC is going to do that given the history of the program but we'll see.

2) Pull down everything on website (unless it's truly been reviewed to ensure accuracy and the advancement of patients' interests).
commitments

Pull down everything on the website! Why don't you Take a look through it? What do you want down? The BioBank part, the part where patients tell their stories, maybe the research section part, maybe the Advocacy part should go.... maybe the Grant section is suspect - who knows what they could have put in there....Then there's the Disability - who knows what snuck in there?...Yes there are problematic parts - many of which are not linked up anymore - instead of taking the throwing the baby out with the bathwater approach - I think it would be better to stick to those.

3) Put up Canadian Consensus Criteria on home page.

Have you ever read the CCC? I suggest that if you haven't - since I guess you haven't - that you do. Its a rather long document. I don't see many websites with long, scientific documents on their Front Page. You might want to check out Health Support website and see what they look like. I don't think that's going to work


4) Divide up CCC into sections and have those be the main reference/ info pages for site.


5) Substitute 'ME' or 'ME/CFIDS' for 'CFS' and 'CFIDS' (including in CAA name).

I do agree that the CAA needs to incorporate ME/CFS more into their materials. As to changing their name - that's not an easy process but I hope they will do that over time.

6) Begin and quickly complete review of all CAA materials, on website and in print, for accuracy and to make sure they advance the interests of patients. Zoom This should begin with everything on the website and the CME.

Repeat of an earlier one.

7) When CME has been edited, renew credit-approval for it (as credit-approval has lapsed).

Again, this was put together by CFS professionals with years of experience - talking to other doctors - I'm going to rely on their experience and accept that they know what they're doing.

8) Aggressively publicize, on the website and in contacting media exactly how the US and UK government have been persecuting ME patients. This includes declaring the Oxford Criteria and any studies based upon it to be totally invalid.


9) Secure agreement from Kim McCleary to do all the above and to otherwise truly advocate for patients. If she agrees, set her salary at $100,000 for 2011 with the assurance that if the board decides she has done an exemplary job, her salary will be raised to $150,000 the following year. If Ms. McCleary can not agree to this, do not renew her contract and begin searching for a replacement.

The CFIDS Association has board of ME/CFS patients many of whom have professional backgrounds to do this. While I think Forum participants have had many very good suggestions - a good number of which the CFIDS Association has followed up on - I'm going to again trust the Board on this one.

10) Aggressively lobby US Congress and HHS for appropriate funding of and response to ME epidemic. This includes a 100 fold increase in funding; appointment of an outside expert as head of CDC Chronic Viral Diseases Branch; change of name to ME or ME/CFIDS and Congressional investigation into HHS misfeasance.

For some reason you think the CFIDS Association is not doing this- which honestly galls me. The CAA Board of Directors and Kim McCleary and Suzanne Vernon just spent three days up on Capitol Hill doing just this. (Except for the name change and congressional investigation). What do you think they were doing? Twiddling their fingers? Do you think it's easy to get more funding for CFS? Have you looked at all into how CFS is funded at the NIH? Do you have any idea of the labyrinthine process CFS researchers have to go through to get funded? I suspect that you don't - since my sense is that you think this is all so easy - that all they need to do is ask.

IF you check out the Congressional record I think you'll find that they ask every year...and they try to get you to ask every year as well. Have you? If not maybe that's one reason we're not getting funded.

11) Take names of CAA employees off of inaccurate and abusive material published by CDC including the CDC CME and the Reeves Definition.

This isn't Russia circa 1930's where you remove the names of authors from documents long after they've been published. I don't think that's going to happen

12) After the preceding is done, start going after purveyors of misinformation such as CDC, NIH, UK NHS, UK NICE, British psychiatrists, journals and textbooks.

13) Include pictures of wheelchair- and hospitalbed-bound patients on the homepage in addition to the current pictures of patients who look depressed but otherwise healthy.

Right now there's picture of a young woman lying in bed. She she doesn't look depressed to me. Why would you characterize her as looking depressed? What is the matter with that picture? Do you want an emaciated, sallow looking woman? You might want to take a look at other Patient Support Organizations website - you don't see that kind of thing. It doesn't appear to work nor does it represent many CFS patients. I've been to CFS conferences - yes, there are some patients like that but most of them look very normal.

I would ask the CAA for a number of things

Be more aggressive
Build a social networking website that gives them even more interaction with the patients
Remove Sparks completely as soon as they can - replace with the CME
Expand the treatment section - incorporate more unusual treatments
Continue to build the Research Network, BioBank, DataBank etc.
Let down their hair more - be more personal
Keep being innovative (Research Network, etc)
Keep exploring other links with other underappreciated diseases
Get the Medscape CME re-financed

 

[BEG]

I have several responses to what I've been reading on this thread this morning.

First of all, for those who aren't familiar with Jo Nijs Department of Human Physiology, here is an article, dated May 2008, which appeared on Co-Cure.

http://cre.sagepub.com/cgi/content/abstract/22/5/426 I found nothing contradictory in this article; I thought they were right on.

At the time, I was searching for and printing articles on excercise. Why? Because my specialist of 7 years, whose name has been used repeatedly in the last several posts, told me at every visit I needed to exercise, and whose first question seemed to be are you exercising? We would have the same conversation every time. I would say, I'm keeping up a home. I was told that isn't exercise. I knew he was wrong.

Thankfully Staci Stevens helped find the answers I needed. Unless you've gone through her protocol, please don't judge her. She's on our side.

Secondly, during the CAA Spark the Awareness campaign, I was asked to interview with a small-time news magazine. The writer was genuinely sincere, and I want you to know what a thrill it was to speak freely and openly about CFS and the impact on my life. I wanted the audience to know of the devastation. The photographer took two pictures: I was sitting with feet up, holding my dog, and in the second one, I was lying on the bed with my eye mask on. Clearly it was during the day because sunlight come through the window. It was the photographer's idea to juxtapose the two. It's probably still on their website. There was an incredible amount of work for that campaign. They sought out the potential media and needed to match the right person. The CAA is indispensible in my mind.

Lastly, kinesiophobia. I had to look that one up. I don't like feeling like I am dying. Or walking death. So I stay within my boundaries in the confines of my home with rest and pacing. Again, I don't like that dying feeling and will do anything to avoid it. If that's kinesiophob, then so be it. I have it.

 

[justinreilly]

This is another nice-sounding idea that one wonders how you can disagree with. But the world is not so simple. The fact is that the CCC has been to my knowledge been used in one out of the thousands research studies done on chronic fatigue syndrome which means you can't relate any of the research done on CFS to it - which means if you replace the 1994 criteria with it you're talking absolute blarney to the research community.

The CCC is also not a research definition - its a clinical definition. It could be turned into one and that may be happening with the IACFS/ME. Before anyone goes lapdog happy with IACFS/ME the only reason for that is that Hemispherx is giving them money to come up with a new research definition. The IACFS/ME is our professional organization - it should be the one to be doing that.

The CAA can support the Canadian consensus criteria and I agree that they should do that more. I think they should strongly advocate for its adoption as the clinical definition of chronic fatigue syndrome. Hopefully the IACFS/ME will create a new research definition that is modeled on the CCC. The CAA has had Dr. Jason write about it before and they are giving him an excellent platform to do so tomorrow.

Practicing Medical Doctors are required to take CME's to maintain licensure. Researchers don't take them. So the focus is on knowledge useful in a clinical setting. Thus, using the CCC is more appropriate than Fukuda, since it is the only clinical definition and the document addresses how to understand the disease, and treat patients based on the authors treating 20,000 ME patients up to that point.

The definition itself is more accurate than Fukuda and the article is the best document by far ever produced on ME/CFIDS and I find it 100% accurate. Of course the CCC should be augmented with recent research findings (based on Fukuda).

The point is we should start with what is accurate and what truly describes the disease- the Canadian Definition and the supporting document, not what has been most utilized or promoted until now.

 

[justinreilly]

CFIDS AA & CDC: CFIDS and ME are Invalid Names for 'CFS'

Original posted by Cort:
Your assumptions are wrong. The CDC puts their own program on their own website - they simply have to keep it running; the CAA, on the other hand, has to pay a substantial amount - from what I've heard - to keep the program on Medscape website. I agree that they should do what they can to keep it current.

I think you assume that you know too much Justin. You may not agree with Kim McCleary's decisions but if you've ever talked with her you can tell she's a very smart woman who doesn't need you to 'babysit' her. She is extremely well-versed in the research side of chronic fatigue syndrome. I would do a lot better with your criticisms if you could couch them in a less demeaning manner.Speaking in such a belittling manner that does two things; one, it can provoke a similar response (probably from me ) and two, it doesn't give the issues complexity the justice due to them. Some people think I'm a shill for the CAA or blind to their faults - I think I've shown that that's not true - but what I've really protested at are demeaning comments like that.

I don't know how much it costs to keep it on Medscape. (Edit: the document is on Medscape, but CAA let the CME credits lapse, so if they are paying alot for it to be on Medscape, it's a waste of money). But, what I do know they should do is draft a really good CME and get it out somehow, perhaps put it on their own website as a start. If we PR forum posters were in that job we would find a way.

The CME situation as it stands is the CDC's bad CME co-authored with CAA (and saying on the first page that CFIDS and ME are invalid names for 'CFS'- this co-authored by the CFIDS Association of America!) is the only current CME. This is not a situation that CAA should have allowed. Period.

The CME says ME is a different disease because it has neurological and muscular signs and CFIDS is an inappropriate name because immune dysfunction has not been shown to be a part of 'CFS'.

The following individuals are considered content experts for this activity:

* James Jones, MD, Research Medical Officer, Centers for Disease Control and Prevention
* Teresa Lupton, RN, BSS, Coordinator for Medical Opportunities, CFIDS Association of America
* Kimbery McCleary, BA, CEO, CFIDS Association of America
* William Reeves, MD, Branch Chief, Centers for Disease Control and Prevention
* Vicki Walker, BA, Manager, Research and Public Policy, CFIDS Association of America (formerly)...

As yet, there are no diagnostic tests or laboratory markers for CFS, and its pathophysiology remains unknown...

Various terms are often used interchangeably with CFS. CFS is the preferred term because it has an internationally accepted case definition that is used in research and clinical settings. The name chronic fatigue and immune dysfunction syndrome (CFIDS) was introduced soon after CFS was defined; there is no case definition for CFIDS, and the name implies an understanding about the pathophysiology of CFS that does not currently exist... The name myalgic encephalomyelitis (ME) was coined in the 1950s to clarify well-documented outbreaks of disease; however, ME is accompanied by neurologic and muscular signs and has a case definition distinct from that of CFS.

http://www.cdc.gov/cfs/cme/wb3151/chapter1/overview.html

These are some of my problems with the first page of this document.

I get a snarky tone not because I have seen a few isolated, excusable problems; it is because I have seen many. I react to the existence of all of this mess with some snark. If they don't like it, clean up the mess!

 

[justinreilly]

From Justin

Here's there's another eye-opening fact for you Justin. The Board of the Fair Name Change Campaign for CFS (Dr. Klimas, Dr. Cheney, Dr. Bateman, Dr. Komaroff, Dr. Jason, Rich Carson, etc) unanimously voted not to have myalgic encephalomyelitis as the name for CFS in 2008 I think it was.

..

Maybe not "Myalgic Encephalomyelitis" per se, but their current position on their website is that they want the name changed to ME/CFS with ME standing for Myalgic Encephalomyelitis or Encephalomyelopathy as the user prefers. This is simply to avoid confusion and smooth the transition by making it clear that the disease formerly known as "CFS" is now known as ME/CFS.

I don't want "CFS" to be part of the new name, but I would be happy to compromise to ME/CFS if that is what is needed to get it through. I personally think either encephalomyelitis (as is the official WHO ICD name since 1968) or encephalomyelopathy (to include the 20% of ME patients who have neurological disease but no lab evidence of brain inflammation on MRI or other imaging) are great and much more appropriate than other names.

 

[justinreilly]

Below is my list of requests of CAA. Thanks to Cort for feedback. In bold and italics are Cort's responses and in blue are my replies to Cort (I can't figure out how to do colors. If someone tells me i will edit this post. thanks):

Quote Originally Posted by justinreilly View Post
1) Put the maximum possible pressure on CDC to appoint an outside expert as the new Chronic Viral Diseases Branch Chief. Someone such as Nancy Klimas, Leonard Jason, Paul Cheney, Dan Peterson, etc. An ostensibly well-meaning CDC insider is not acceptable in view of CDC's long sordid history re: ME. This is a very rare opportunity to make a huge difference in the federal response for years to come. An outside expert running the show could well lead to a cascade effect of increasing medical and social progress.

Why would you think that they're not? They did more to bring down Dr. Reeve's than any other organization. They called for a total revamping of the CFS program. Why would you think they're not committed to someone like Dr. Klimas. I think that's very unlikely the CDC is going to do that given the history of the program but we'll see.

I don't doubt a commitment to outside experts like Dr. Klimas. I don't know how much emphasis they are putting on this, if any; I have seen no mention from CAA except to note that a CDC spokesperson said CDC was going to go ahead with appointing someone ASAP. I am just stating that's what I want to see.

2) Pull down everything on website (unless it's truly been reviewed to ensure accuracy and the advancement of patients' interests).
commitments

Pull down everything on the website! Why don't you Take a look through it? What do you want down? The BioBank part, the part where patients tell their stories, maybe the research section part, maybe the Advocacy part should go.... maybe the Grant section is suspect - who knows what they could have put in there....Then there's the Disability - who knows what snuck in there?...Yes there are problematic parts - many of which are not linked up anymore - instead of taking the throwing the baby out with the bathwater approach - I think it would be better to stick to those.


OK, you have a point- just pull down everything that talks about the disease and how to treat it. Replace with material from CCC article.

3) Put up Canadian Consensus Criteria on home page.

Have you ever read the CCC? I suggest that if you haven't - since I guess you haven't - that you do. Its a rather long document. I don't see many websites with long, scientific documents on their Front Page. You might want to check out Health Support website and see what they look like. I don't think that's going to work

I've read it a couple of times. Put up the intro section with a link to the doc. Substitute all their information sections on the disease and treatment with the corresponding sections from CCC article. This has been strongly suggested by a number of other people on this thread with noone dissenting except for you.

4) Divide up CCC into sections and have those be the main reference/ info pages for site.

5) Substitute 'ME' or 'ME/CFIDS' for 'CFS' and 'CFIDS' (including in CAA name).

I do agree that the CAA needs to incorporate ME/CFS more into their materials. As to changing their name - that's not an easy process but I hope they will do that over time.

I am happy we mostly agree. This one would go a long way toward helping us out. :Retro smile:

6) Begin and quickly complete review of all CAA materials, on website and in print, for accuracy and to make sure they advance the interests of patients. This should begin with everything on the website and the CME.

Repeat of an earlier one.

7) When CME has been edited, renew credit-approval for it (as credit-approval has lapsed).

Again, this was put together by CFS professionals with years of experience - talking to other doctors - I'm going to rely on their experience and accept that they know what they're doing.

I have a tremendous amount of respect for Drs. Lapp and Bateman.

I think this document is too important to leave to the experts including co-author Kim McCleary. I don't know who wrote what, but I do know the document could be made a good deal more accurate and helpful and this should be done.

8) Aggressively publicize, on the website and in contacting media exactly how the US and UK government have been persecuting ME patients. This includes declaring the Oxford Criteria and any studies based upon it to be totally invalid.

9) Secure agreement from Kim McCleary to do all the above and to otherwise truly advocate for patients. If she agrees, set her salary at $100,000 for 2011 with the assurance that if the board decides she has done an exemplary job, her salary will be raised to $150,000 the following year. If Ms. McCleary can not agree to this, do not renew her contract and begin searching for a replacement.

The CFIDS Association has board of ME/CFS patients many of whom have professional backgrounds to do this. While I think Forum participants have had many very good suggestions - a good number of which the CFIDS Association has followed up on - I'm going to again trust the Board on this one.

Her strategies and execution have not worked well enough. There needs to be a change. Either Ms. McCleary commits to change and executes or new leadership should be installed. I guess we agree to disagree.

10) Aggressively lobby US Congress and HHS for appropriate funding of and response to ME epidemic. This includes a 100 fold increase in funding; appointment of an outside expert as head of CDC Chronic Viral Diseases Branch; change of name to ME or ME/CFIDS and Congressional investigation into HHS misfeasance.

For some reason you think the CFIDS Association is not doing this- which honestly galls me. The CAA Board of Directors and Kim McCleary and Suzanne Vernon just spent three days up on Capitol Hill doing just this. (Except for the name change and congressional investigation). What do you think they were doing? Twiddling their fingers? Do you think it's easy to get more funding for CFS? Have you looked at all into how CFS is funded at the NIH? Do you have any idea of the labyrinthine process CFS researchers have to go through to get funded? I suspect that you don't - since my sense is that you think this is all so easy - that all they need to do is ask.

IF you check out the Congressional record I think you'll find that they ask every year...and they try to get you to ask every year as well. Have you? If not maybe that's one reason we're not getting funded.

They are lobbying, which is good. I have read the CAA lobbying documents you have pointed me to and others. I am including this more as a statement of what I think is important than as a statement that CAA isn't doing it.

Since we don't have results I suspect not enough is being done, but I can't say for sure since I am not involved myself.

This is the first year I have written in to Congress about appropriations. I will do so in the future. I feel, as an individual, I am doing my share for awareness. I feel that CAA, as the most prominent patient organization with more resources than me as an individual, is not doing enough.

11) Take names of CAA employees off of inaccurate and abusive material published by CDC including the CDC CME and the Reeves Definition.

This isn't Russia circa 1930's where you remove the names of authors from documents long after they've been published. I don't think that's going to happen

I don't understand your response. I am not asking the government to remove CAA employees' names without the employees' consent. I think CDC likes having CAA affiliated names on their papers since it shows they have coauthorship from patient advocates. I am saying CAA and it's employees should take their names off of the CDC documents such as the CDC CME saying that 'CFIDS' is an invalid name for 'CFS' since no immune dysfunction has been shown.

In the case of former CAA employees who don't want their names taken off, then those names wouldn't be taken off. In that case though, I would like CAA to ask CDC to include a sentence in the authors list that CAA no longer supports the document.

12) After the preceding is done, start going after purveyors of misinformation such as CDC, NIH, UK NHS, UK NICE, British psychiatrists, journals and textbooks.

13) Include pictures of wheelchair- and hospitalbed-bound patients on the homepage in addition to the current pictures of patients who look depressed but otherwise healthy.

Right now there's picture of a young woman lying in bed. She she doesn't look depressed to me. Why would you characterize her as looking depressed? What is the matter with that picture? Do you want an emaciated, sallow looking woman? You might want to take a look at other Patient Support Organizations website - you don't see that kind of thing. It doesn't appear to work nor does it represent many CFS patients. I've been to CFS conferences - yes, there are some patients like that but most of them look very normal.

I understand what you're saying. There is nothing wrong with being depressed and it is a natural reaction to a devastating disease. Most people who have ME look healthier than they are. Approximately 25% are home-, wheelchair- or bed- bound so it would be nice to include some more images of them. Andrea Whittemore in NYTimes with an oxygen tube- I thought that was a good look. :Retro smile: It conveyed ME is a serious disease.

(I understand a popular thing in media and websites is people looking serious against grey skies, but it seems like that reinforces a bit the idea of ME as healthy depressed people. This last point is a minor one on which people will disagree.)

I would ask the CAA for a number of things

Be more aggressive
Build a social networking website that gives them even more interaction with the patients
Remove Sparks completely as soon as they can - replace with the CME
Expand the treatment section - incorporate more unusual treatments
Continue to build the Research Network, BioBank, DataBank etc.
Let down their hair more - be more personal
Keep being innovative (Research Network, etc)
Keep exploring other links with other underappreciated diseases
Get the Medscape CME re-financed

I like your suggestions!

 

[justinreilly]

My question with regard to kinesophobia or behavioral therapies or anything like that is do you think ME/CFS patients are human beings?

That's a serious question. Do you think ME/CFS patients are, by and large, normal human beings or do you think that somehow this disease plucked out a superhuman subset of humans who are immune to all of the missteps and mistakes that the general trend of humanity makes when faced with any really difficult situation?

I think people with ME/CFS were probably normal human beings some of whom, when faced with such a difficult situation probably make errors of judgment. I know I sure have. The army doesn't throw recruits in the middle of a battle without extensively retraining them first. Nobody trained any of us in how to deal with a completely life altering situation. People are going to make mistakes suggesting that we aren't going to do that is, to me, untenable.

Therefore, if its Dr. Lapp and Dr. Bateman experience that some patients have a kinesophobia then I'm not surprised! I would suspect some people to develop that. Most of the times in my journey through CFS I've overdone it physically but there have been times I have definitely under done it on the activity front and it really did me temporary harm. Juggling activity levels is not an easy process after all, the nature of this illness - with the sometimes postponed reaction to exercise, makes it difficult, sometimes, to figure out what is causing what.

After reading the CME I think doctors will look at this illness from all angles. The kinesophobia section is one small section of the document that only applies to one set of patients. While patients may not get that I think doctors understand that it's probably a normal reaction that some people will have and that it is to be expected.

It doesn't sound plausible to me that a significant percentage of ME patients have frank kinesophobia- a mental disorder characterized by an irrational fear of movement, causing panic when one thinks of moving. I would be interested in looking further into this if and when CAA becomes open to patient contributions to editing their documents. It would be illuminating to hear the views of the authors. For now, we disagree.

 

[justinreilly]

An additional comment on the falacy of simply denying that an expert like Bateman or Lapp or Klimas could have written a statement. I have spoken one on one with a number of top CSF researchers and one of the things that stands out is that to a person, they are all willing to state that there is much that they don't know. That degree of humility while trying to help their patients in very difficult situations is impressive and hard earned.

Making a recommendation based upon what you believe is in your patients' best interests when so many questions remain is always fraught with the danger of being second guessed. Making a recommendation to doctors with little background is CFS exponentially more so.

CBS- not sure if you're responding specifically to my comments. The kinesophobia material doesn't sound like it would have come from Drs. Lapp or Bateman, but of course, I don't know for sure. I agree that the real experts are admirably humble about what they don't know. That's an indication that this passage was probably not written by an expert like Lapp or Bateman. Declaring without evidence that ME patients suffer from implausible mental illnesses is the bedrock approach of charlatans like the UK psychiatrists, not of true experts like Lapp and Bateman.

We all have our own experiences and we are passionate about what we "know" and yet we cannot state with confidence which aspects of our own experience are shared across the population of CFS patients.

This is true. It is a huge challenge.

The CFS doctors that I know are not arrogant, to a person they have been humbled by this illness. A like minded approach in addressing 'missteps' in recommendations (so as not to make yet another misstep in a different direction - and yes, I think that for myself there have been periods when being slightly more active has made me more resilient down the road - but that's just my interpretation) is far less likely to be dismissed as simplistic and uninformed by those with a much broader (but perhaps not as deep - at least as a long time CFS patient's) exposure to CFS.

I agree they are not arrogant. It is particularly the improper use of the term 'kinesophobia', a specific and bizarre mental illness, which I think we can all agree is quite unusual in ME patients, if it exists in our population at all, which smacks of the arrogance and the type of inappropriate psychopathologizing that lies at the heart of Wessely et al.'s strategy.

If and when CAA is open to editing of their materials, I would love to contribute in getting to the bottom of this. Personally, I'm not going to expend more energy now querying the authors since it probably won't have an impact on the document.

 

[CBS]

CBS- not sure if you're responding specifically to my comments. The kinesophobia material doesn't sound like it would have come from Drs. Lapp or Bateman, but of course, I don't know for sure.

Not with respect to kinesophobia (I don't know Dr. Lapp but would have little doubt that this isn't Dr. Bateman's view of CFS patients). Just saying that I in some of the conversations I have had, it has been enlightening to discuss positions on a number of different recommendations and perspectives.

These docs get such a huge range of patients and conversations with them are always filled with caveats and qualifications with regards to perspectives on THEIR typical patient or the subset of patients they are referring to with any one comment. For instance, it is my impression that Dr. Bateman sees a much broader range of patients than does Dr. Montoya (type of clinic plays a role as does finances) and while there is overlap, they have their own areas of emphasis. Patients seeing each of these docs seem very pleased and well cared for. That's what I was referring to as breadth of experience (much more so than I will ever have).

Each of these two docs has over a decade of seeing CFS patients and they seem to share a language in spite of their very different practices. That said, I know that they would probably not agree on everything (may be more a matter of emphasis but I suspect not in all matters). I think that could be said for any two of the small group of dedicated, well respected and prominent CFS docs. I imagine that the meetings where policies are set can be quite interesting.

As I said earlier, I feel strongly that patients bring a depth of experience that informs this conversation. In the past, we haven't been involved in this conversation to the degree that we are presently. A lot of people have stepped up and at the same time Cort created a very powerful tool. My hope is that as advocacy groups and leading CFS docs are approached, we make sure to do so in a manner that conveys real urgency while also indicating a desire to understand (they know we're angry, they might be a bit surprised and relieved if on more occasions we asked how something came to be). I feel strongly that patients and advocacy groups can and need to work together for change.

 

[Dolphin]

We all have our own experiences and we are passionate about what we "know" and yet we cannot state with confidence which aspects of our own experience are shared across the population of CFS patients.

The CFS doctors that I know are not arrogant, to a person they have been humbled by this illness. A like minded approach in addressing 'missteps' in recommendations (so as not to make yet another misstep in a different direction - and yes, I think that for myself there have been periods when being slightly more active has made me more resilient down the road - but that's just my interpretation) is far less likely to be dismissed as simplistic and uninformed by those with a much broader (but perhaps not as deep - at least as a long time CFS patient's) exposure to CFS.

I don't think it should be forgotten that some patients involved in running patient organisations can also have quite "broad" exposure to CFS also.

I have seen enough by her to think Lucinda Bateman might place too much emphasis on exercise programs in an education program for my liking.