The CAA Pamphlet to Educate Doctors

[starryeyes]

WOSPE - Yes, that's much better. To me it sounds like "whoopsie-daisy

lol that makes me laugh.

Kim wrote: Do you know that in almost every other illness - something that exacerbates it is known as 'worsening of symptoms'. It's standard terminology in medical literature.

Oh then from now on I'm writing that “exerting myself in any way causes a worsening of my symptoms”. Thank you Kim. This explanation doesn't need an acronym. I want CFS treated and written about like all other illnesses are.

 

[jspotila]

I was planning to write them directly when I got the energy, about the subject of which definitions of CFS they support.

It sounded like from jspotila's post somewhere else that they have over 100 pages of comments to read and respond to and she mentioned they would be putting up some sort of FAQ on the Web site.

I've captured the request and passed it on. We've discussed a LOT of different documents in this (and other) threads, so what I am capturing is the request to review materials posted on the website and remove outdated/inaccurate information, and create new materials when necessary. Hopefully, this conveys the combined requests here.

 

[starryeyes]

That's awesome jspotila! Thank you so much.

 

[The Phantom]

I've captured the request and passed it on. We've discussed a LOT of different documents in this (and other) threads, so what I am capturing is the request to review materials posted on the website and remove outdated/inaccurate information, and create new materials when necessary. Hopefully, this conveys the combined requests here.

That's great news! Making sure the infomation on the website is accurate will help a lot of people. Thanks!

 

[fresh_eyes]

That's great to hear, Jennie - thank you.

 

[Samuel]

Hey Tina,

I'm afraid I couldn't read all of your post because of the big blocks of text. Maybe you will break it up

Anyway, I just wanted to say that everyone with ME/CFS owes it to themselves to find out all they can about Prof. White and the other players.

We live in a global village; insurance companies are international.

Chronic illness is expensive and, to many, distasteful which is why they would rather see us as having a moral failing than a physical one. "If I have to keep plodding through my exhausting, difficult life, why shouldn't you?!" This is human nature which is independent of geopolitical borders.

We are expensive and we are expendable; not a good combination.

Well put, Koan.

 

[MEKoan]

Why, thank you Samuel!

How is the viewing problem?

Any solutions?!!!

 

[Samuel]

What you say: "As in other chronic illnesses, some patients
may benefit from psychosocial support focussing on issues
related to adjusting to their illness."

What they hear: "blah blah blah blah blah, blah blah blah
blah blah PSYCHOSOCIAL blah blah blah blah blah blah blah
blah blah blah."

Replying to my own post here. I just realized that some people might think I was talking about advocates. I was not.
I am talking about readers of the pamphlets -- or of ANY advocacy materials.

 

[MEKoan]

In my opinion, this pamphlet is a total nightmare despite the fact that this or that piece of information may be accurate. I hadn't read it before tonight but a lot of strong feelings people have about the CAA make a great deal of sense to me now. (Thanks for talking to yourself Samuel!)

I find it hard to believe that this is what the CAA came up with in 2009. I think it is frightening.

 

[starryeyes]

I'm glad to see you feel that way too Koan. I'm not happy with it at all. I was hoping they would have changed it by now.

 

[Andrew]

The CAA has been advised about the Peter White section of their pamphlet and given detailed information about how the Oxford criteria is wrong. They have been advised about the problems patients face when exercise is not taught with clear instructions about energy management and relapse prevention. But the pamphlet is still sitting on their web site as it always has been. They could, at least, remove it until they decide how to revise it. There are doctors who actually read this stuff. I have one. And I'm tired of having to deal with him trying to act on the bad advice from CAA.

The saying for doctors is "First, do no harm." I wish the CAA would practice it. Because I don't care how many whiz bang researcher conferences they have if they are still doing us harm.

 

[anne]

It's still there?????

 

[Andrew]

It's still there?????

Yes, they haven't done a thing. The phamphlet is on their page for health professionals under Clinical Care for Chronic Fatigue Syndrome.

There have been dozens of posts about this, two of us posted links to the pamphlet, and I sent them an email about this.

 

[MEKoan]

I truly do find this shocking.

The over-emphasis on the psychological aspects of ME/CFS - little different in this illness than in any other illness - is totally inexplicable. Why go on and on for page upon page about CBT and excercise?!

The meta message is that psychological factors are the most noteworthy aspects of ME/CFS and that CBT and GET are the most appropriate treatments. This is, I believe, the inescapable conclusion which will be drawn by any, physician or lay person, reading this pamphlet. The odd accurate statement about biological issues, here and there, does little to address the enormous weight given to the our supposedly faulty attitude.

I am completely at a loss. I cannot understand how this can be acceptable to anyone who has even basic understand of this illness let alone the organization so many of you support with your rapidly disappearing resources. It is, I think, scandalous.

 

[Chris]

Belated coming to this thread

Hi, all; have just read through this thread (when I first looked at it as it began I did not know what CAA stood for...), and agree with most of the negative commentary--it is appalling that this is part of what our docs read when they go to the web for info on CFS. And thanks to all for some great commentary on exericise and PEM-PEE stuff. A couple of things strike me: one is the date--2005-6; it reads like something from prehistory--there is one side ref to Cheney, but nothing about hearts and cardiac function, nothing about mitochondrial dysfunction, nothing about viruses--let alone retroviruses. The world has changed! This document must be replaced!

I think many of the statements from named docs are honest, but we all know that more work has been done on things like exercise since; but does anyone know anything about Marcia Harmon, who put the thing together? Her biases are evident not only in the side piece intruding Peter White into the discussion, but also in her reference to Stephen Straus and his 2004 JAMA article. Straus is the guy who wrote a piece that resulted in a press release that said "LIFETIME HISTORY OF PSYCHIATRIC ILLNESS IN PEOPLE WITH CHRONIC FATIGUE SYNDROME" and resulted in headlines like this in the Washington Post: "Chronic Fatigue linked to psychiatric troubles." (Osler's Web, p. 315).

Does anyone know whether she is still Director of Communications at CAA?

It is also worth checking out the CFS piece on UpToDate, a commercial outfit that produces info designed to bring docs up to date--I was given a copy by my doc--it claims to have been updated in Jan 2009, but is pretty appalling --I have mislaid my copy at the moment, but includes statements that the discussion whether CFS is psychogenic or biogenic is still unresolved, that it does not kill, and that there is no point in doing immune testing because the results would only include false positives (it being assumed nothing serious is wrong, so they would have to be false). I will post more if and when I find it again.

I am writing a letter to the Vancouver Island Health Authority because they control health services where I live, and my doc downloaded the document from their website, but writing not only to CAA but also to health authorities who maintain websites designed to help keep GPs up to speed might be something to think about some more--probably some of you are already doing that and are way ahead of me--I have only just started thinking about advocacy issues--a bit late, I admit.
Best, Chris

 

[jspotila]

Clarifications, Answers

As I posted earlier in this thread, I have captured and passed on the request "to review materials posted on the website and remove outdated/inaccurate information, and create new materials when necessary." Your request is still pending, but I'm afraid I can't give you a timeline about when this will happen.

Koan said:

I find it hard to believe that this is what the CAA came up with in 2009.

The Association did not write that article in 2009. It was written in 2006, and published as part of the special research issue of the Chronicle that year.

Andrew said:

They have been advised about the problems patients face when exercise is not taught with clear instructions about energy management and relapse prevention.

Indeed, and there are many articles on the Association's website which address the importance of energy management, preventing relapse, etc. In fact, on page 5 of the article at issue in this thread:

A New Definition of Exercise
Its somewhat ironic that for an illness where patients are often diagnosed as deconditioned and characterized as lazy, exercise exacerbates symptoms rather than relieving them. Well-meaning health care professionals often recommend aerobic exercise as a cure-all for the symptoms of CFS without fully understanding the potential consequences of their prescriptions. As anyone with CFS who has attempted to "get fit" using traditional approaches to exercise knows, the results can be devastating.

Chris asked:

Does anyone know whether she [Marcia Harmon] is still Director of Communications at CAA?

Marcia left the Association in December 2008.

 

[Andrew]

Indeed, and there are many articles on the Association's website which address the importance of energy management, preventing relapse, etc. In fact, on page 5 of the article at issue in this thread:

This is a pamphlet being offered to doctors to give them an overview of how to deal with patients. We cannot assume a doctor is going to ignore the pamphlet and search the web site instead.

With regard to page 5, as I pointed out earlier in the discussion, the problem is not the absence of mentioning post-exertion malaise. The problem is it's only mentioned in passing. On page 5 it mentions that exercise doesn't work the same for CFS, and then goes on to offer a plan. But the exercise plan is standard advice for healthy people who are out of shape, with no adjustments made for CFS.

 

[jspotila]

The future of the entire Spark! website is on hold right now. The website was part of the public awareness campaign funded by CDC, but that campaign is winding down. As the contract is wrapped up and comes to an end, the Association will be making decisions on what to do with the Spark! website: keep it with changes, migrate content to the regular website, or shut it down - or somewhere in between. I will keep all of you posted as this unfolds.

 

[usedtobeperkytina]

This is the year folks. Everything is changing.

XMRV
More studies will come out
CAA former campaign expires
CDC changes over CFS.

Hold on folks, going to be a memorable ride.

Tina

 

[jspotila]

This is the year folks. Everything is changing.

XMRV
More studies will come out
CAA former campaign expires
CDC changes over CFS.

Hold on folks, going to be a memorable ride.

Tina

I agree that 2010 will be a memorable year! Just to clarify, though, the CDC declined to obligate any additional money to the awareness campaign some time ago (don't have specific date at hand) so the end of that campaign was scheduled to happen well before the October Science article.