Hello Teej,

Quote Originally Posted by teejkay View Post
Maarten I addressed your points:

Thank you Teej, and as I said in my post you address, I am under no delusion that I know much about the CAA.

Maarten wrote:

(1) They are probably mostly doing their best even if you disagree with them, and have a helluva job.

You replied:

What we are suggesting they do wouldn't be much work for them. We want them to remove the CBT and GET and other disparaging remarks from their Continuing Medical Education materials. We'd do it for them for free if they'd let us.

I completely agree with you content-wise - but of course they can't let them do it by just any patients (else what are they existing for).

My own subtextual consideration was also that patients organisations that I know of with regards to ME, Lyme and FM seem to be generally not successful in getting heard were it matters most: In the media for defending the rights of the patients, and in the universities to get properly educated doctors, or at least to get known as an organisation that does have useful medical information,

(MM) (2) One of their major problems is to get heard, read or seen to exist at all, by medics & media.

(TK) (re 2) There are many doctors who have gone through their CME programs.

Any idea how many? (Mere curiosity, but not irrelevant.) Anyway: They did succeed in getting heard and read to that extent (but yes, I agree with you: If these doctors then are served nonsense, or part nonsense and part falsehood, this does not help their patients nor these doctors who are reached).

(MM) (3) The CAA - apart from the quality of the public information they try to get read - cannot be held responsible for educating or miseducating doctors and others: Everybody if sane is himself or herself responsible for his or her (mis)educated beliefs (if acted upon or advocated publicly).

(TK) (re 3) Actually, many people, including doctors, nurses etc.. do turn to the CAA education materials to learn how to cope with patients who have ME/CFS. And when they turn to sources like the CAA they believe them because CFS is very confusing.

Contentwise I must agree again with you: CAA should not be doing this and should not have done this. (Dr. Yes provided a good quote - directly under your post I react to - from the Canada Criterions explaining why.)

My own point was more about personal responsibility, morally and intellectually speaking: The CAA should give correct information and should not support CBT nor GET, but in the end, especially with the internet existing, intellectuals, such as medical doctors, ARE responsible for whatever beliefs they have arrived at about intellectual questions (and saying "ho, ho, ho: it's not my fault that I support GET: I am merely following the CAA" is no excuse).

(MM) (4) The perception of people with ME by the general public or the unclued medical doctor or psycho does not depend on patients' organisations but on the media and on standards and contents of the education they got in universities.

(TK) People in med school aren't being educated about CFS by our media nor by our universities but the CAA has been disseminating materials and giving learning credits to doctors for decades that teach our doctors to use CBT and GET on us as treatments.

Again, I agree with you content-wise. Otherwise, as under (3).

In sum: We agree far more than not - the CAA should give correct information, and should not even seem to support CBT or GET, for that is just harmful and dangerous nonsense with a real physical disease as the WHO has been insisting now for 41 years now (!!) - and I wrote my original post because of what I think about imputing responsibility to the CAA for what doctors come to conclude, especially since the internet is there, for doctors are each and all responsible for their own opinions in medical matters, and there is plenty good information available on the internet. Here is a link to my own summary:

-- https://maartensz.org/me/ME%20-%20Documentation.htm

Which leads me to a concluding point:

IslandFinn - who has very delectable legs, for males, and also manages to find great amounts of very useful information: Hey IF ;) - proposed an excellent idea that Andrew picked up: See my


and the posts that follow it.

That is: By now I think the Phoenix Forums have sufficient woman+man power to start rolling our own, as regards to the information sensible and benevolent medical people should know and have read about ME, and as regards what is dangerous to impose on or spread about patients with ME.

I am quite serious:

I think with a month or two of searching and discussing, the members of this forum are quite capable to produce GOOD reading lists and material for medical people and about therapies, which this forum supports in majority (and polls can be taken).

This also would be a good thing to have re the CAA:

'This is what many patients with ME gathered on the Phoenix Forums agreed to makes sense - and the majority at the Phoenix Forums (if US residents, perhaps) also think this is what the CAA should use to inform medical doctors and the public.'

Power To The Patients! (Mentally hearing John Lennon.)