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

[Kati]

Here is my take since this is going to be sent out to CAA-

1) tell the truth- if you don't know say you don't know
if you can't tell, say so.

2) Answer questions and answer them directly, and to whom it concerns.

3) The recent campain, solve CFS- that was unuseful- how much money did you spend on that???

4) We need strong leadership to represent all of us. We need things to move and quickly.

5) CDC issue: Bill Reeves has to go. It's urgent- not sure where he is hiding- A complete reorganization of that is in order- or for the moment suspend all activities and distribute moneys to private research like WPI-

6) Work on recommendations from CFSAC (Oct 2009)- aim at achieving all of them by next meeting-

7) We definitly need more research money- and I would expect CAA to facilitate grants and government money to be increased by lots... 3 millions is not a lot for CFS- compared to cancer and HIV. This is appaling.

8) Outreach, support and help with other out of country organizations- UK needs a change of attitude, and many other countries need specialists to diagnose and treat CFIDS patients. MAybe WHO could help???

9) Support local groups like mentioned before.

 

[Cort]

I think this is all good. I have felt for some time that the CAA could be less cautious and more, for want of a better term, 'inflammatory' in their advocacy efforts.

I do want to point out that the CFIDS Association has worked behind the scenes to try and accomplish several of those goals. They did an extensive report on the NIH's misrepresentation of funds spent on chronic fatigue syndrome (sound familiar?) couple of years ago. They regularly ask for Centers of Excellence.

They lead the effort on the CDC over the past year and a half. No one other organization even came close to matching the amount of effort and rigor they put into taking the CDC to task. In fact at a critical part of the evaluation process they were the only ones mounting an effort in that area and that's what really killed the attempt to alter the CDC program. Honestly its tough to read this

and just in case they do not understand this, let them know that the most important ones are:

1. ESTABLISH REGIONAL CENTERS

2. GET RID OF BILL REEVES

when they worked their butts off - by themselves for over a year - before anybody joined in! I assure you they get it about Bill Reeves!

I very much agree that being less cryptic in their communications and basically explaining why they're doing something (or not doing something) would be very helpful.

I tell you advocating for CFS is a tough row to hoe. Politicians are very leery about asking the NIH or CDC to focus on specific types of research. They feel both groups know best and many of them simply won't even entertain the idea of intriguing in that area. I encountered that several times first hand when I was at lobby day.

 

[anne]

I know this is an incredibly difficult project, and fraught with peril, but somehow we need to be able to guide patients to doctors who can give them some help. And perhaps this can be annotated with types of treatment so people can make their own decisions (instead of the organization having to make judgements about the efficacy of F&F centers, for example). The co-cure list is basically worthless, and people just struggle and struggle even to get diagnosed, much less some kind of treatment.

 

[Andrew]

I believe that the CAA has done many good things. I also think they have made some serious mistakes. My purpose in adding a couple of complaints here is the hopes that the CAA is reading this thread and is considering areas to improve.

1. According to Leonard Jason and other sources, CAA does not support the name change. Research has demonstrated the CFS name as damaging. We need this change. The only reason I can see for not supporting the change is that there is a better alternate name that is just around the corner. And I don't see one.

2. CFS is a serious debilitating illness. The Faces of CFS said as much. But then it pointed to the inadequate (and sometimes misleading) information at the CDC. In my opinion, this is like recommending a doctor who is known to do a bad job. I also felt the campaign denied how hard it is to get diagnosed and get helped. I found this approach to be dismissive. And I realize that this is what you get when you work with the CDC. My point is, you should not have joined with them. And I'm bringing up the past in case this Faces campaign is ongoing.

 

[starryeyes]

Thank you Khalyal- Geek Girl for communicating our wants and needs to the CAA. And Cort, I am listening and carefully considering everything you are saying about them.

tee

 

[Khalyal]

Thank you, everyone! for a really good discussion. I am sending the link to this thread to Jennie Spotilla, so that they can read all of it. All links and emailed comments are going in on Monday.

I am so pleased that we were able to come together and do this. Let's all keep our fingers crossed that something good comes of it.

Khaly

 

[anne]

Thank you so much, Khaly for doing this, and to the CAA for listening.

 

[Dolphin]

2. CFS is a serious debilitating illness. The Faces of CFS said as much. But then it pointed to the inadequate (and sometimes misleading) information at the CDC. In my opinion, this is like recommending a doctor who is known to do a bad job. I also felt the campaign denied how hard it is to get diagnosed and get helped. I found this approach to be dismissive. And I realize that this is what you get when you work with the CDC. My point is, you should not have joined with them. And I'm bringing up the past in case this Faces campaign is ongoing.

I think generally, by world standards for evidence-based guidelines, the CDC website last time I checked wasn't too bad on Graded Exercise Therapy (GET) and CBT based on GET.

I'm not sure if enough people in the US are worried enough about the treatment guidelines that are likely to come if the CDC changes its website. Pushing for the CDC to change could be risky as its gone more towards the view that GET and CBT based on GET are the answers. As I understand it, some of the info was put together by Leonard Jason, Charles Lapp and somebody else whose name escapes me.

And I'm not sure people are wary enough about treatment guidelines that other clinicians may come up with. Most US doctors seem to be too much into exercise programs for my liking. I think guidelines put together by people like Lucinda Bateman and Nancy Klimas may recommend exercise programs that are not suitable to many. And in the countries such as the UK, this can cause people problems getting disability payments as they are often expected to have done GET before they will be given payments by insurance companies.

The term "evidence-based" guidelines in CFS generally means GET and CBT baased on GET. What other treatments do people know of that have had 2 or more positive randomised controlled trials (RCTs) for CFS?

 

[Andrew]

I checked wasn't too bad on Graded Exercise Therapy (GET) and CBT based on GET.

I only have so much energy to review what CDC is talking about. But from what I've seen, they do a lot of pointing to UK studies about CBT and GET. The UK research guidelines in Journal of the Royal Society of Medicine Volume 84 February 1991 don't differentiate between CFS/ME and idiopathic chronic fatigue. IMO, any study that follows these guidelines is not valid for CFS/ME.

That said, I don't want to completely throw out something that might benefit a subset of sufferers. So, by all means, they should mention valid studies. But they should not bolster this with research and guidelines for a different illness.

I also see a pattern in the CDC advice that I find disturbing. For example, in the section about possible causes they mention immune problems. But in the treatment section, they don't recommend that immune problems be addressed. There seems to be a pattern there of selective attention and inattention based on a disease paradigm that does not fit the facts.

 

[Cloud]

I applaud the CAA for being willing to work with us and explore ways to improve communication with the patient community. There are just too many people unhappy with the CAA for their complaints to not be valid.....and this doesn't negate any of the good that they do. It mostly seems a cry for an effective mode of communication that will ensure advocacy is being carried out in a way that will satisfy the patient community. We need an effective system that links the voice of the patient community to the CAA. Thank you Khaly for the energy you have put into facilitating the beginning of what could be a positive change. Everyone's voice matters....we just needed a way to get our voice communicated.....and we need a system in place for that to continue. No more vague answers to critical questions having to do with our lives! The CAA is accountable to it's patient community, just as I am accountable to my patients as an RN. So, lets get a system in place that everyone feels is productive and successful with enabling our voice to be heard and adequately responded to.
Maybe we need a good unbiased representative who will facilitate communication between us and the CAA.

 

[Dolphin]

I checked wasn't too bad on Graded Exercise Therapy (GET) and CBT based on GET.

I only have so much energy to review what CDC is talking about. But from what I've seen, they do a lot of pointing to UK studies about CBT and GET. The UK research guidelines in Journal of the Royal Society of Medicine Volume 84 February 1991 don't differentiate between CFS/ME and idiopathic chronic fatigue. IMO, any study that follows these guidelines is not valid for CFS/ME.

That said, I don't want to completely throw out something that might benefit a subset of sufferers. So, by all means, they should mention valid studies. But they should not bolster this with research and guidelines for a different illness.

Don't get me wrong, I'd be happy enough if guidelines didn't suggest exercise at all or only in passing e.g. with a warning

I know in July/August 2007 (when the CDC/CAA would have been doing their campaign), there was a process in Ireland and we found what was on the CDC website was helpful to "defend ourselves" against a push for exercise
especially from other guidelines that were being reviewed e.g. draft NICE
guidelines (final version was similar), Australian guidelines.

Individual doctors are free to try out drugs that might work on their patients. I don't think the CDC is likely to put a list of possible drugs that might conceivably work in one of their programmes (except maybe drugs for symptomatic relief). And there have been few Randomised Controlled Trials in this illness. And pretty much the only areas where there have been more than one "positive" trial is GET and CBT based on GET. And if you have guidelines that mention that, that can sound very convincing - sure isn't exercise good for us all, good for people's weight, etc.

I agree that Oxford criteria (1991) studies should be excluded. But they use the term CFS and I don't think they will be in "evidence-based guidelines".
Especially ones drawn up by the CDC who use the empiric definition.

It is something I have seen around world - official treatment guidelines are
often bad in the CFS area but people pushing for treatment guidelines often
forget that they can leave the situation worse, they can think instead that
they'll only lead to an improved situation.

And as I say, nice though Lucinda Bateman and Nancy Klimas and some other US doctors are, the exercise programs they are suggesting are not suitable in my opinion for many with moderate to severe ME/CFS (perhaps they are ok for people with Fibromyalgia).

 

[Marylib]

Direct is best I think

.
Maybe we need a good unbiased representative who will facilitate communication between us and the CAA.

Here's a thought in response to Ross' post:

If we need another advocacy group to communicate with the extant advocacy group, this points out the need to totally revamp the CAA.

 

[Andrew]

Don't get me wrong, I'd be happy enough if guidelines didn't suggest exercise at all or only in passing e.g. with a warning

I agree. The emphasis is all wrong.

The problem with "graded exercise" is the approach sends the wrong message. It puts the emphasis on exercise, and only mentions post exertion malaise in passing. I think that if they really wanted to be helpful, the paradigm should be "pacing and relapse prevention." And then cover exercise within this framework. And they should be instructed that their patients are sick, and not just out of shape.

And as I say, nice though Lucinda Bateman and Nancy Klimas and some other US doctors are, the exercise programs they are suggesting are not suitable in my opinion for many with moderate to severe ME/CFS (perhaps they are ok for people with Fibromyalgia).

I don't know what they are suggesting. I was taught muscle exercises I can do lying down. These are not aerobic. At my worse, I spread these out over the day, and only did two repetitions each. This was to prevent muscle atrophy and blood clots. But I never pushed the limit. And the physical therapist never asked me to push the limit.

Individual doctors are free to try out drugs that might work on their patients. I don't think the CDC is likely to put a list of possible drugs that might conceivably work in one of their programmes (except maybe drugs for symptomatic relief).

My complaint is the selective way the CDC covers things. They suggest evaluation and treatment of orthostatic intolerance. So why don't they make the same suggestion about NK cell problems. Makes me wonder.

 

[Dolphin]

Don't get me wrong, I'd be happy enough if guidelines didn't suggest exercise at all or only in passing e.g. with a warning

I agree. The emphasis is all wrong.

The problem with "graded exercise" is the approach sends the wrong message. It puts the emphasis on exercise, and only mentions post exertion malaise in passing. I think that if they really wanted to be helpful, the paradigm should be "pacing and relapse prevention." And then cover exercise within this framework. And they should be instructed that their patients are sick, and not just out of shape.

Exactly

And as I say, nice though Lucinda Bateman and Nancy Klimas and some other US doctors are, the exercise programs they are suggesting are not suitable in my opinion for many with moderate to severe ME/CFS (perhaps they are ok for people with Fibromyalgia).

I don't know what they are suggesting.

Here is one example http://www.cfids.org/sparkcfs/exercise.pdf . As I recall, I think this is them trying to be "on their best behaviour" with regard to exercise. I'm not sure I've ever seen anything by Lucinda Bateman that I'm happy with. Nancy Klimas sometimes says useful things but too often she suggests programs that are too much for a lot of people.

Individual doctors are free to try out drugs that might work on their patients. I don't think the CDC is likely to put a list of possible drugs that might conceivably work in one of their programmes (except maybe drugs for symptomatic relief).

My complaint is the selective way the CDC covers things. They suggest evaluation and treatment of orthostatic intolerance. So why don't they make the same suggestion about NK cell problems. Makes me wonder.

When I was saying the CDC information wasn't that bad, I was mainly referring to exercise. I haven't looked as closely at the other stuff.

I think the example you gave above with orthostatic intolerance fits into symptomatic relief. This happens a lot it seems with doctors information/guidelines for CFS - it's seems to be ok to mention research and possible treatments for specific symptoms but more causal information and particularly immunological information tends to be ignored. And my feeling is that the CDC has moved away from infections/immunology since the guidance was put together. So new guidelines I don't think would be an improvement. I am just speculating on the last bit.

But with regard to exercise I have so often seen information I don't think would be suitable to give to doctors and in that context, what the CDC had last time I checked wasn't too bad.

 

[Cort]

Good point Andrew; because the media campaign was completed funded by the CDC it was obviously necessary to point back to the CDC. It also pointed back to the CFIDS Association. I guess one question is - given the chance to inform the public about chronic fatigue syndrome do you put up with a less than complete or perhaps accurate portrayal or do you just say no?

The CFIDS Association did move on. They had had enough of what they believed was the CDC's overly conservative approach to treatment and about a year and a half ago they created their own physician treatment program which has been much more successful than the CDC's program. Lucinda Bateman and Charles Lapp (I believe) helped produce it.

I don't remember any problems with Dr. Bateman's exercise advice. Its basically to start very very slowly and to not do anything that produces a flare.

With regards the CDC; the CDC with their problems and missteps can change. Maybe five or six years ago the Vermont CFIDS group tried to get the medical community interested in publishing a guide to chronic fatigue syndrome. That community took a look at the CDC site and came away with the impression that this is a psychological disease. About three years ago from the Vermont group tried again; this time the CDC's website had changed; based on that they considered that CFS is a real disease and they backed the project.

They do have a very limited focus on this disease. To some extent they should have a limited focus - they have a small program and they can't do everything. They have, however, ignored some pretty big findings in this disorder. Its' amazing they've never incorporated natural killer cell dysfunction into their research. They completely ignored RNase L., vascular function, repeat exercise studies and more.

The biggest problem with their program for me is that it's just not interesting any more. They're doing rather lackadaisical studies and not pushing the envelope in any area. Nor do they seem to be interested in what other researchers are doing. Many other research findings are not reflected on their website - its like they don't exist. Its not a creative or innovative program anymore.

 

[Dolphin]

Here is one example http://www.cfids.org/sparkcfs/exercise.pdf . As I recall, I think this is them trying to be "on their best behaviour" with regard to exercise. I'm not sure I've ever seen anything by Lucinda Bateman that I'm happy with. Nancy Klimas sometimes says useful things but too often she suggests programs that are too much for a lot of people.

This article gives a better view of where she is coming from I think:
http://www.aboutmecfs.org/Trt/TrtBateman07.aspx

Tips on co-morbid conditions:
Metabolic Syndrome:
[..]
If you have metabolic syndrome, you can gradually shift the way you eat. You can find things you like and then you need to increase your activity level. Be very careful because many fibromyalgia medications worsen metabolic syndrome.

compare also:
http://www.cfids.org/cfidslink/2008/040906.pdf

CFS Clinical Pearl:
Recognizing Metabolic
Syndrome By Lucinda Bateman, MD

What, if anything, should you as a medical professional be investigating and potentially treating with respect to his weight gain?

Once metabolic syndrome is recognized, you can do the following:

-Develop a tolerable regimen of physical activity that will help prevent weight gain. (tomk: she doesn't know anything about this patient yet is advising this to the professional)

Pacing and Exercise.

[..]

However, when you don’t do anything, you become extremely deconditioned. If you permanently immobilize an arm in a cast, it’s turned into a wet noodle. Likewise in Chronic Fatigue Syndrome, in six or eight weeks, all your muscles atrophy and they take ages to rebuild. If your pre-illness conditioning level is up here, and your activity reduces to here, your physical conditioning, meaning your strength and ability to tol*erate activity, will gradually fall to your new average. Sustaining your conditioning level requires work. This is a given for all chronic illness. Exercise tolerance is individual, so you need to really figure this out, but not knowing how or not wanting to exercise is a human condition. It has nothing specific to this illness.

We know there’s a problem with exercise; we need to inspect it and be careful about it. We don’t understand it very well yet. Much more research is required, but once again you as individuals need to figure out what you can do to minimize your de-conditioning.

We have geriatric data. In one sense elderly people are similar to a chronic fatigue syndrome patient. They’re frail. They may have multi-system illness and cognitive dysfunction. They have trouble getting around. They have pain issues, and may be taking all kinds of medications. It’s an interesting parallel. If you feel like you’re 80, in some ways, you’re analogous to a geriatric person in decline.

But exercise really improves functioning in geriatric patients. It’s one of the best interventions for an elderly person. Exercise in Chronic Fatigue Syndromes in the right amounts does reduce fatigue and pain, mostly pain. It doesn’t eliminate it. And you can certainly make your fatigue and pain worse by exercising. I’m saying to use judgment. Paced exercise usually im*proves sleep, and helps control weight gain, but it needs to be completely adapted to you.

This is where she is coming from.

There's no evidence that I know of that exercise programs decrease pain in CFS (unlikely many other people in society). In fact once-off studies suggest it is much more likely to increase pain.

Similarly, there's no evidence that I know of that exercise programs improve sleep in CFS. In fact many people think bouts of exercise can interfere with their sleep.

Personally as I have said on this forum before, on a panel coming up with treatment guidelines, I don't see her challenging people of the CBT/GET school of thought very much; I think they would come to some consensus that would involve recommending to physicians that they encourage their patients to exercise. An awful lot of people with CFS have enough demands on their energy levels. They don't need ignorant doctors and other professionals to be told that what they should do is encourage patients they come across to exercise.

Studies of programs that have used pedometers such as some Fred Friedberg have done have shown that people don't necessarily do more activity if they go for walks. It replaces other activity in their day. Activity that might in effect be more important - chores, activities with children, activities with spouse/partner, work, etc.

If people want to exercise, that's fine but I don't think professionals need to be told that it will help patients' sleep and pain, when I don't believe there's evidence for such statements in CFS. Doctors will naturally think exercise will do this; they don't need it re-inforced by a CFS expert.

 

[Cort]

I think its about avoiding deconditioning. I know when I completely stop 'exercise' (physical activity) I don't do as well - even if I have flares.

"The key is patience--not doing too much at once and learning not to exceed the threshold that results in "payback" symptomsToday, 9 years after onset of CFS. I HAVE BICEPS.. I have lost 15 unwanted pounds. I look better and I feel better in some ways. Besides adding stamina and strength, exercise has reduced my pain"

Linda Milne, disabled 64 year old CFS patient

http://www.aboutmecfs.org/Trt/TrtExercise.aspx

 

[Dolphin]

Here's a study people can quote if people are telling them that their problems are connected with deconditioning, which is a very annoying thing to be told:

Is physical deconditioning a perpetuating factor in chronic fatigue syndrome? A controlled study on maximal exercise performance and relations with fatigue, impairment and physical activity.

Psychol Med. 2001 Jan;31(1):107-14.

Bazelmans E, Bleijenberg G, Van Der Meer JW, Folgering H.

Department of Medical Psychology, University of Nijmegen, The Netherlands.

BACKGROUND: Chronic fatigue syndrome (CFS) patients often complain that physical exertion produces an increase of complaints, leading to a greater need for rest and more time spent in bed. It has been suggested that this is due to a bad physical fitness and that physical deconditioning is a perpetuating factor in CFS. Until now, studies on physical deconditioning in CFS have shown inconsistent results.

METHODS: Twenty CFS patients and 20 matched neighbourhood controls performed a maximal exercise test with incremental load. Heart rate, blood pressure, respiratory tidal volume, O2 saturation, O2 consumption, CO2 production, and blood-gas values of arterialized capillary blood were measured. Physical fitness was quantified as the difference between the actual and predicted ratios of maximal workload versus increase of heart rate. Fatigue, impairment and physical activity were assessed to study its relationship with physical fitness.

RESULTS: There were no statistically significant differences in physical fitness between CFS patients and their controls. Nine CFS patients had a better fitness than their control. A negative relationship between physical fitness and fatigue was found in both groups. For CFS patients a negative correlation between fitness and impairment and a positive correlation between fitness and physical activity was found as well. Finally, it was found that more CFS patients than controls did not achieve a physiological limitation at maximal exercise.

CONCLUSIONS: Physical deconditioning does not seem a perpetuating factor in CFS.

PMID: 11200949 [PubMed - indexed for MEDLINE]

 

[Dolphin]

I think this sort of activity/work is good and pro-active.

Still Running for the Money …

By Suzanne D. Vernon, PhD
Scientific Director, The CFIDS Association of America

http://cfids.org/cfidslink/2009/110404.asp

 

[Andrew]

Here is one example http://www.cfids.org/sparkcfs/exercise.pdf . As I recall, I think this is them trying to be "on their best behaviour" with regard to exercise. I'm not sure I've ever seen anything by Lucinda Bateman that I'm happy with. Nancy Klimas sometimes says useful things but too often she suggests programs that are too much for a lot of people.

Exercise is a very difficult topic. Pwc have been so mistreated about this that many of use are skeptical of any exercise program. And, I think we should be. OTOH, there is an approach that wraps exercise into a context of careful crash avoidance. It's Bruce Campbell's approach. And, of course, it would have to be simplified for severe disability. But I think this is the model the CBT/GE brigade should be using.

...seems to be ok to mention research and possible treatments for specific symptoms but more causal information and particularly immunological information tends to be ignored.

Yes. It is most curious.