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

[Mithriel]

I don't see that elderly people have the same problems with exercise as people with ME. It misses the point that exercise is to ME what pollen is to hay fever - it causes a worsening of symptoms.

David Bell said that his patients would feel fine if they spent all their time lying down.

Exercise, often minimal, makes all the symptoms of ME worse. People often mistake the post exertional malaise of ME with the aches people get after going to the gym for the first time in months, but it is very different.

All the body will be affected, not just the part that was exercised. Indeed physical effort can often lead to mental confusion. An elderly lady has never forgot how to get home just because she was encouraged to take a walk but this happened to me.

Life events at one point meant I increased my exercising very gradually and I began to feel fitter and much better. I thought I was on my way to a cure.

Unfortunately the underlying illness was still the same but the new fitness meant I lost my cues for when to stop. One Wednesday afternoon in May 1990 after three months of getting fitter simply by walking more, my legs stopped working. I have never managed to take more than a dozen steps since and am a house bound wheelchair user.

Doctors just don't seem to appreciate this any more. The understanding has been lost with the passing of doctors like Melvin Ramsay who really understood this disease.

Mithriel

 

[Dolphin]

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.

I think energy management of the illness is important (as is stress management etc).

I think Bruce Campbell writes good stuff.

But the whole concept of pre-emptive rest is not something that is generally recommended by those that recommend exercise programs.

I think crash avoidance is the main thing - if you crash, any supposed "gains" can be more than lost and one can end up worse than when one started. If one exercises in the morning, one can tend have unexpected demands that day and then it means you overdo it that day while if one had only done one of the two things that day, one would have been ok. It's a difficult area. But it needs to be remembered that if one is not careful, one can end up with a system where advice to exercise (and encouragement to exercise through CBT) is all that are offered to patients - this is basically what is offered to patients in the public systems in England, Belgium and the Netherlands. This is what medical and health professionals are told about - and given non-doctors can't prescribe or request tests, this is what they'll concentrate on. It causes a real mess.

 

[fresh_eyes]

I don't see that elderly people have the same problems with exercise as people with ME. It misses the point that exercise is to ME what pollen is to hay fever - it causes a worsening of symptoms...
All the body will be affected, not just the part that was exercised. Indeed physical effort can often lead to mental confusion...

Well said, Mithriel. That's the difference exactly. I've always loved to exercise, but now it makes me, not tired, but sicker.

 

[Andrew]

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?

If it involves a patient advocacy group becoming a subcontractor of a group they are supposed to protect us from, I think the answer is "no." I think it compromises the watchdog role, and leads to bad feelings from the membership.

FWIW, this was not the first thing that turned me off. I began to feel turned off with the first CAA newsletter I received. Too many self-glorifying articles, and a page design that guarantees sensory overload. And now they switched to paper size that is so big I can't read the magazine lying down. Not to mention moving most of the content to the web.

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.

Thanks. I think this is a key fact in understanding changes in CAA.

 

[Cort]

I would note that the CAA did, in the midst of their contract with the CDC, call for a complete overhaul of the CDC program and for new leadership. The CDC retaliated by taking their good sweet time on paying them the money they owed them.

I thought they did a very innovative thing by getting the CDC to do its first media campaign ever - on CFS. Somehow that was lost on most people.

The CAA did subcontract with the CDC to run the media campaign but that contract did not - as so many advocates have proposed - somehow keep the organization afloat. It simply paid the CAA to pay people (ie a PR firm) to run the media campaign.

Print costs are too high and the organization has too little money to keep sending out the Chronicle; it was forced to find an alternative.

 

[Khalyal]

Sent to CAA

Okay, gang, all of your comments were just sent to the CAA, to Jennie Spotilla. I included the following note:

To Jennifer Spotila, CFIDS Association of America

Dear Jennifer,

Thank you for taking an interest in the current groundswell of conversation regarding the direction of the CFIDS Association of America. We appreciate the opportunity to express our concerns, and hope that they are addressed with sincerity and great care.

As promised, I am sending you links to the comments and responses that were made in venues other than the two that we know youve been watching, as well as a few emails that were sent to me with requests to remain anonymous. This is a lot of reading, but every comment is made in the hopes that it will be addressed, so it is my sincere hope that each and every one will be read and considered. If nothing else, it will give you some idea of the perception people have.

I think we all appreciate that you took the time to let us know that you were paying attention.

Sincerely,
Khaly Castle

 

[Andrew]

I would note that the CAA did, in the midst of their contract with the CDC, call for a complete overhaul of the CDC program and for new leadership.

I think that's an important point. It shows that the partnership didn't prevent CAA from speaking up.

I thought they did a very innovative thing by getting the CDC to do its first media campaign ever - on CFS. Somehow that was lost on most people.

In my case, I was so upset by the level of denial in the campaign, it took away my feeling that something good was happening.

Anyway, what it looks like is the CAA taking a very innovative step by getting CDC to do this campaign. But because it is with the CDC, it ends up with the conservative CDC approach. Some pwc are very unhappy with the CDC approach and they feel like the CAA should not have helped spread it.

I wonder what result this campaign actually had. We know it pissed off at least some of the pwc. Was there positive feedback from pwc?

 

[starryeyes]

Thank you very much Khalyal. You are a gem for taking this on. I just want them to address one thing for starters and it's in my sig line.

tee

 

[Khalyal]

From Jennifer Spotila

From Jennifer Spotila:

Khaly, thank you for collecting these comments and questions. I will read each one carefully. There are many questions and suggestions in the comments, and I will do my best to answer them. I can't give a date certain for those answers right now, as I have no clear sense of the time it will take. However, I can say that this a priority and I do not intend to leave these comments languishing on a shelf.

Thank you, everyone, for sharing your views with us. We listen to all feedback, and the views of the CFS community are an important piece of the Board's work.

 

[Cort]

Congratulations Khaly for opening a direct line of communication to the CAA's board - something no ones really thought to do before.

Teejay - check this out - its the CAA's detailed critique of the CDC's program. (It was actually the most comprehensive overview of the CDC's program that anyone offered.)

http://www.cfids.org/temp/research-plan-response.pdf

I think you'll find a wide degree of overlap between that and the CFSAC's recommendations

Check out this http://www.cfids.org/advocacy/fy09-passed-senate-language.pdf for language CAA got inserted into a Senate bill asking for, among other things, COE's. This, of course, has been a central request for many years.

Here are the CFSAC's recommendations

Recommendation # 1

Establish progressive leadership at the CDC that can achieve efficient meaningful progress in CFS research, clinical care and education.

Recommendation # 2

Provide adequate funding to CDC to effectively carry out a detailed 5-year plan. This should include, but not be limited to, immediate progress in these priority areas:

• Identification of biomarkers and etiology of CFS;
• Creation of guidelines for adult and pediatric CFS management in full partnership with organizations representing CFS scientific and clinical expertise;
• Provision of web-based guidelines for CFS management given our current state of knowledge and expert opinion, again in full partnership with organizations representing CFS clinical and scientific expertise; and
• Provision of comprehensive information about CFS in partnership with CFS experts to the scientific community, medical and mental health providers, educational institutions and the public for both adult and pediatric CFS through DHHS resources

.

Recommendation # 3

Establish Regional Centers funded by DHHS for clinical care, research, and education on CFS. These centers will provide care to this critically underserved population, educate providers, outreach to the community, and provide effective basic science, translational, and clinical research on CFS.

 

[starryeyes]

Thanks for the info Cort. I'm super brain-fogged atm and those pages are sending my head reeling right now but from what I could comprehend this looks good. I'm pleased to see the CAA making this effort of filing complaints with the CDC.

I just keep hearing that not one of the CFSAC Recommendations has ever been acted upon. Not one? I want to see the CAA put the pressure on and keep it on until we see noticeable changes at the CDC that we can be happy with.

I'm going to have to remember to go over this info much more carefully when my brainfog clears more.

tee

 

[Cort]

Its such a tough business with the the NIH and CDC; they don't give a damn - they really don't; they don't believe ME/CFS is serious, they're not interested in researching it or finding treatments for it - its a tough business. They don't care about all the sick people - they just don't want to study it.

Its conpounded by the fact that most Congressman and Senators have decided not to interfere in the NIH or the CDC - its very hard to get political pressure to bear.

The bureacracy at the NIH and CDC are the big problems.....they turn their backs on us again and again. Yes there are individuals who'd like to and do help us - but they are only individuals - once you get past that first layer there's virtually nothing. Its rough!

 

[Kati]

Its such a tough business with the the NIH and CDC; they don't give a damn - they really don't; they don't believe ME/CFS is serious, they're not interested in researching it or finding treatments for it - its a tough business. They don't care about all the sick people - they just don't want to study it.

Its conpounded by the fact that most Congressman and Senators have decided not to interfere in the NIH or the CDC - its very hard to get political pressure to bear.

The bureacracy at the NIH and CDC are the big problems.....they turn their backs on us again and again. Yes there are individuals who'd like to and do help us - but they are only individuals - once you get past that first layer there's virtually nothing. Its rough!

Wow Cort, this is hard truth to swallow. But I must say it has been encountered over and over again in the medical field. (from experience) Mainly administrators were for the longest time, maybe still are, men in their 50's and 60's. In terms of health, what concerns them is their heart- lots of cardiac budget at least for our canadian health care system, and orthopedics so they can continue playing golf.

I used to be a maternity nurse, and the budget for a maternity unit, OR time, or even a dedicated anestetist to perform epidurals was never accepted, but the heart surgeries budget, joint replacement etc was always there.

It is not fair. But we must keep talking loud and clear. We must keep sending letters and strong messages that action is needed.

 

[starryeyes]

Cort,

I agree with what you are saying. However, I dream of a CFS patient support group that will be relentless about getting in the CDC's and NIH's faces anyway. That's what we need them to do. The CAA should be showing us, the patient community, that they are keeping the heat on.

So Moses went back to the Pharaoh and said, "Let my people go." - the Bible

tee

 

[Khalyal]

I'm glad to see

Hillary weigh in on the recent XMRV cold war.

Amen, sister!

Thanks for posting this, Wildaisy

 

[Roy S]

This is a recent blog about advocacy and the CAA that I think is worth reading; especially the comments.
http://forums.aboutmecfs.org/blog.php?b=43

Cort wrote in part "I think we haven't had really effective, inspiring leadership either."

 

[annunziata]

To reduce this to something very simple, I cannot put Ms. McCleary's salary together with the fact that this disease is still called "Chronic Fatigue Syndrome".

I miss the kick-ass, grassroots organization that Marc Iverson began years ago. It has become completely unrecognizable.

 

[Cort]

I don't remember it being very kick ass. I remember a CAA with a kind of dopey Chronicle that talked about little things patients could do to get better. I quit it in disgust actually. That was sometime in the 90's.

Regarding the name. Remember that the entire CFSAC Committee - filled with people that we all admire - was the one that really put the kaput on the Name Change Effort about 8 years ago. They voted unanimously against a Name Change; Since the Name Change Effort was started by them the thing died.

Although the CAA contributed greatly to that campaign they never mounted their own. Their own analysis of other name changes showed that even when you change a bad name to a good one funding for research etc. drops dramatically for at least several years afterwards. At that time research was in the tank; there were so few research proposals coming in that the CAA shelved their grant program and instead put on at least one conference in order to try and stimulate the field.

The CAA may have been wrong in not mounting another name change campaign but it was never as black and white an issue as many people think.

 

[annunziata]

Name change

Well, with respect to the name change, I can only say that I feel this always should have been a priority, and I believe the 'old' CFIDS Assoc. was of that opinion, too.

I am sure the studies showing that funding drops after a name change are accurate. However -- this is an extremely disparaging name. I'll just speak for myself and say that I feel it is stunningly inaccurate and insulting, and has fueled misperceptions about the disease for twenty years. Had it been up to me (well, it wasn't of course ), I would have gone ahead with such a campaign and been fierce about it. What have we gained by retaining the name CFS? Most doctors/scientists haven't wanted to be associated with anything that sounds so risible.

 

[Andrew]

Many people here are unhappy with CAA. So here are my questions.

1. How do we vote in a better leader at the CAA? What is the mechanism for change?

2. If we can't change CAA, which of the existing patient advocacy organizations can we support, even if it is a local group that can be made into a national. IOW, which group seems to be doing it right? The only group that's caught my eye recently is PANDORA, but I don't know much about them.