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

[starryeyes]

teej, when writing up a document the references are what you read that agrees with the points you are making, there would be an entirely different CME if we wrote it by reviewing the best of the literature that supports the patient experience and makes use of the Canadian definition instead of Reeves. That the list contains what it does, and what it doesn't, is telling.

Oh. That makes sense. I was being told that this CME was written by only 2 doctors before. I got confused about which CME we were talking about.

Dr. Yes - thank you for posting that study. Even Peter White couldn't find exercise phobia in us. Imagine that!

 

[Dr. Yes]

Do YOU have Kinesiophobia??

I just couldn't resist sharing something I found when I googled "kinesiophobia". You can test yourself for it!

The psychometric testing used to determine whether or not you have IT is the Tampa Scale for Kinesiophobia (TSK). Trouble is, that test is for pain patients, and measures avoidance behavior due to fear of pain. So, in the only CFS study I could (easily) find that supposedly found kinesiophobia in CFS patients, the researchers brilliantly adapted the test to CFS by removing the word "pain" and replacing it with "symptoms". (They used a Dutch version of the TSK, btw).

And here it is! Simply rate your response to each question below on a scale of 1 to 4:
1 = strongly disagree, 2 = disagree, 3 = agree, 4 = strongly agree

-------------
1. I am afraid that I might injure myself if I exercise.

2. If I were to try to overcome it, my symptoms would increase.

3. My body is telling me I have something dangerously wrong.

*4. My symptoms would probably be relieved if I were to exercise.

5. People are not taking my medical condition seriously enough.

6. My illness has put my body at risk for the rest of my life.

7. My symptoms always mean I have harmed my body.

*8. Just because something aggravates my symptoms does not
mean it is dangerous.

9. I am afraid that I might injure myself accidentally.

10. Simply being careful that I do not make any unnecessary
movements is the safest thing I can do to prevent my symptoms
from worsening.

11. I would not have this many symptoms if there was not
something potentially dangerous going on in my body.

*12. Although I have many symptoms, I would be better off
if I were physically active.

13. My symptoms let me know when to stop exercising so
that I do not harm myself.

14. It is really not safe for a person with a condition like
mine to be physically active.

15. I cannot do all the things normal people do because it is
too easy for me to get injured.

*16. Even though something is aggravating my symptoms, I
do not think it is actually dangerous.

17. I should not have to exercise when I am experiencing
symptoms.
------------------

Now - tricky! - reverse your scores for questions 4, 8, 12, and 16.. meaning 1 becomes 4 and vice versa, 2 becomes 3 and vice versa.

Lastly, add up the scores, and you're done!

Total scores can range between 17 and 68; the higher the score, the higher your degree of kinesiophobia! "A total score greater than 37 indicates high fear of movement."

I got a 42. Now I'm really scared!


(Another game: Can YOU see what's wrong with this test?)

 

[lansbergen]

Kinesiophobia

Dr Yes

(Another game: Can YOU see what's wrong with this test?)

Not using a safty belt protects against accidents.

 

[Gerwyn]

I just couldn't resist sharing something I found when I googled "kinesiophobia". You can test yourself for it!

The psychometric testing used to determine whether or not you have IT is the Tampa Scale for Kinesiophobia (TSK). Trouble is, that test is for pain patients, and measures avoidance behavior due to fear of pain. So, in the only CFS study I could (easily) find that supposedly found kinesiophobia in CFS patients, the researchers brilliantly adapted the test to CFS by removing the word "pain" and replacing it with "symptoms". (They used a Dutch version of the TSK, btw).

And here it is! Simply rate your response to each question below on a scale of 1 to 4:
1 = strongly disagree, 2 = disagree, 3 = agree, 4 = strongly agree

-------------
1. I am afraid that I might injure myself if I exercise.

2. If I were to try to overcome it, my symptoms would increase.

3. My body is telling me I have something dangerously wrong.

*4. My symptoms would probably be relieved if I were to exercise.

5. People are not taking my medical condition seriously enough.

6. My illness has put my body at risk for the rest of my life.

7. My symptoms always mean I have harmed my body.

*8. Just because something aggravates my symptoms does not
mean it is dangerous.

9. I am afraid that I might injure myself accidentally.

10. Simply being careful that I do not make any unnecessary
movements is the safest thing I can do to prevent my symptoms
from worsening.

11. I would not have this many symptoms if there was not
something potentially dangerous going on in my body.

*12. Although I have many symptoms, I would be better off
if I were physically active.

13. My symptoms let me know when to stop exercising so
that I do not harm myself.

14. It is really not safe for a person with a condition like
mine to be physically active.

15. I cannot do all the things normal people do because it is
too easy for me to get injured.

*16. Even though something is aggravating my symptoms, I
do not think it is actually dangerous.

17. I should not have to exercise when I am experiencing
symptoms.
------------------

Now - tricky! - reverse your scores for questions 4, 8, 12, and 16.. meaning 1 becomes 4 and vice versa, 2 becomes 3 and vice versa.

Lastly, add up the scores, and you're done!

Total scores can range between 17 and 68; the higher the score, the higher your degree of kinesiophobia! "A total score greater than 37 indicates high fear of movement."

I got a 42. Now I'm really scared!


(Another game: Can YOU see what's wrong with this test?)

I know I am being simple here .Why not avoid all this mess altogether and use the canadian consensus document which involved leading US experts anyway.Cheap simple copy and paste.How long would that take.Lets take the consensus of many rather than the viewpoints of a few especially when such viewpoints are ambiguous at best!

 

[Roy S]

(Another game: Can YOU see what's wrong with this test?)

ummmm..... it's stooopid?

 

[starryeyes]

:tear: Roy!

Now - tricky! - reverse your scores for questions 4, 8, 12, and 16.. meaning 1 becomes 4 and vice versa, 2 becomes 3 and vice versa.

Lastly, add up the scores, and you're done!

Total scores can range between 17 and 68; the higher the score, the higher your degree of kinesiophobia! "A total score greater than 37 indicates high fear of movement."

I got a 42. Now I'm really scared!


(Another game: Can YOU see what's wrong with this test?)

Hilarious Dr. Yes because it's so true to life. Thank you for entertaining us while educating us. :tear:

 

[starryeyes]

Hello Teej,

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

Any idea how many? (Mere curiosity, but not irrelevant.)

In the CME there are charts that show how many responded to questions.

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:

-- http://www.maartensz.org/me/ME - Documentation.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

http://www.forums.aboutmecfs.org/showthread.php?4161-Looking-for-good-PEM-article&p=65330#post65330

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.)

Maarten.

Thank you for so eloquently responding Maarten. I appreciate the time and thoughtfulness you've put into this post. I really like your Summary and IFs proposal as well as your powerful Website.

You've got the Website for us to promote our own materials and Talking Fox will have a website up in May. We should create our own international CMEs and post them here and on yours and TF's websites.

What would be great is if we could offer credits to doctors and other medical personnel for completing our online CME packets.

Well.. a gal can dream.... I just love the idea of rollin' our own.

Power to the People - right on!

 

[Jerry S]

I know I am being simple here .Why not avoid all this mess altogether and use the canadian consensus document which involved leading US experts anyway.Cheap simple copy and paste.How long would that take.Lets take the consensus of many rather than the viewpoints of a few especially when such viewpoints are ambiguous at best!

I, too, do not understand why the CAA doesn't adopt the Canadian Consensus document and the name ME/CFS. It's been 7 years since it was published.

What could be simpler, easier, or cheaper?

I guess I'm simple.

 

[shiso]

I agree completely with this.

I.e., how hard would it be for the CAA to publicly endorse the Canadian Consensus criteria and simply put the document on their website where it educates the public about what ME/CFS (or CFS or CFIDS as they call it) is?

It's a brilliant idea in its simplicity. Just by prominently posting the document, it would give the public and doctors a more accurate description of the disease than what's currently there. It would address the notion that we're just chronically fatigued with a bunch of bizarre symptoms. It explains how severe and disabling the disease can be.

I can't think of any argument against it.

 

[oerganix]

I agree completely with this.

I.e., how hard would it be for the CAA to publicly endorse the Canadian Consensus criteria and simply put the document on their website where it educates the public about what ME/CFS (or CFS or CFIDS as they call it) is?

It's a brilliant idea in its simplicity. Just by prominently posting the document, it would give the public and doctors a more accurate description of the disease than what's currently there. It would address the notion that we're just chronically fatigued with a bunch of bizarre symptoms. It explains how severe and disabling the disease can be.

I can't think of any argument against it.

They are moving in that direction, at dinosaur speed. The BioBank specimens have to come from 4 docs using the Canadian Consensus. April 14 CAA will have another Webinar on the definition and diagnosis, by Dr Jason, a trustworth, CFS-savy doc, so that should be helpful, too.

In the meantime, why can't they get the material that has been polluted by the Wessely, Sharpe, Reeves, Jones, et al gang off the site? Right now.

 

[Jerry S]

They are moving in that direction, at dinosaur speed. The BioBank specimens have to come from 4 docs using the Canadian Consensus. April 14 CAA will have another Webinar on the definition and diagnosis, by Dr Jason, a trustworth, CFS-savy doc, so that should be helpful, too.

In the meantime, why can't they get the material that has been polluted by the Wessely, Sharpe, Reeves, Jones, et al gang off the site? Right now.

Yes! Well said, shiso and oerganix!

 

[Gerwyn]

They are moving in that direction, at dinosaur speed. The BioBank specimens have to come from 4 docs using the Canadian Consensus. April 14 CAA will have another Webinar on the definition and diagnosis, by Dr Jason, a trustworth, CFS-savy doc, so that should be helpful, too.

In the meantime, why can't they get the material that has been polluted by the Wessely, Sharpe, Reeves, Jones, et al gang off the site? Right now.

Why on earth was it put on in the first place.If there is a contract then the details must have been discussed

 

[starryeyes]

Hello Teej,

Thanks very much!



Indeed: My main website -- http://www.maartensz.org/ -- has currently a bit less than 256 MB of mostly text, which is a bit less than 1% of what it may carry...

So YES, there is a lot of space available on my site, and it was started 14 years ago
(1) to defend myself
(2) to write about what interests and concerns me personally & intellectually and
(3) to write about ME.

Also, I don't mind one bit about being controversial (as you may have noticed), especially not on my site.

So... I really think we should start organizing rollin' our own, on the lines of



sort of section, that is, in fact two:

(A) for suggesting texts (mostly internet-material, I think) and discussing them on the forum
(B) for including the texts most on the forum agree to, rather like the present Library.

And I think this forum can and should do the same for remedies, therapies, drugs, supplements, diets... what have you, with similar (A) and (B), simply to have

(I) good standard references of reliable medical knowledge about and for medical people and patients, and
(II) good standard references of - more or less, for some - effective (partial) remedies of various kinds.

If nobody starts a thread or two on this - or indeed a category or two RSN, say



under the Treatment and Therapy section (any takers: IslandFinn, Kim, Andrew, Dr. Yes??) or indeed in a whole new main section, say "Recommended By The Phoenix Forums" I'll start it RSN.

For this seems to be one of the things this forum can do, that also needs doing.



It's just a matter of doing it, and it may be done in a month or two, judging by my experiences on this forum, and then will be a permanent point of reference that - today - 1600+ persons with or concerned about ME have agreed on, democratically, by patient patients' peer reviews of what's available, and by free rational discussion.

After all, there are medical doctors, nurses, statisticians, psychologists, mathematicians, lawyers on this forum, and many with LOTS of experiences, insights and a gift for telling it like is: We can do it if we try!

And once it is there, the US folks with ME on the forums can say to the CAA: It's there. That's what WE think, in majority and after due consideration: DO something with it, with your funding and paid staff!!

Best wishes Teej, and thanks for your kind words,

Maarten.

P.S. Also, I think it would do no harm whatsoever if we try to juice it all up, once it starts getting in place, with doses of CoFIBs: Having fun in between really makes serious stuff a LOT more palatable, and the talent for that is also present om the forums.

Wow! This is awesome. I love this vision. This will give us a great place to put our energies and I'm rubbing my hands together over the amount of space that's on your website. Whooee! Let's get this off the ground.

Maarten, what does RSN stand for? "Right away, Soon, Now?" lol

I like the idea of making it serious for starters and then selectively juicing it up if we feel that it's appropriate.

My vote is to start this in the Actions and Advocacy Section or it's own section in that section like the Sock Thread. Or we could start our own club like others have done here.

What do IF and others think?

 

[starryeyes]

I, too, do not understand why the CAA doesn't adopt the Canadian Consensus document and the name ME/CFS. It's been 7 years since it was published.

What could be simpler, easier, or cheaper?

I guess I'm simple.

KISS Keep It Simple Stupid :Retro tongue:
This should have been done yesterday.

 

[Lily]

Congrats Teej

Congrats Teej, on getting to the truth on the CME course. I might not always agree with the way you go about something, but I love that you do it. A little like a dog with a bone sometimes, but you usually get to the truth. Now, what to do with it. This is looking hopeful to me.

Thanks!:Retro smile:

 

[starryeyes]

Yay Lily. I'm glad. I like to go for the win/win.

 

[justinreilly]

I just couldn't resist sharing something I found when I googled "kinesiophobia". You can test yourself for it!

The psychometric testing used to determine whether or not you have IT is the Tampa Scale for Kinesiophobia (TSK). Trouble is, that test is for pain patients, and measures avoidance behavior due to fear of pain. So, in the only CFS study I could (easily) find that supposedly found kinesiophobia in CFS patients, the researchers brilliantly adapted the test to CFS by removing the word "pain" and replacing it with "symptoms". (They used a Dutch version of the TSK, btw).
Lastly, add up the scores, and you're done!

Total scores can range between 17 and 68; the higher the score, the higher your degree of kinesiophobia! "A total score greater than 37 indicates high fear of movement."

I got a 42. Now I'm really scared!


(Another game: Can YOU see what's wrong with this test?)

Great find. The gall of these 'scientists' never ceases to amaze me!
I got a 60 out of 68. I guess I have an severe phobia to moving by body setting off extreme panic if I think about moving. Funny, I hadn't noticed. You learn something from science every day.

This reminds me of the MMPI a neuropsychologist gave me, which was not adjusted for people with actual physical illness. It rates you as psychopathologic if you agree with statements like "I am quite concerned about my health" and "I am not getting appropriate health care". Anyone who is not getting proper healthcare is labeled mentally ill. You should have seen the computer generated report text- it made me sound like a lunatic whose whole life revolved around hypochondriasis. Once something like that gets in your chart, it's an uphill battle as we all know.


Test fail:

 

[justinreilly]

New CAA CME

I, too, do not understand why the CAA doesn't adopt the Canadian Consensus document and the name ME/CFS. It's been 7 years since it was published.

What could be simpler, easier, or cheaper?

I guess I'm simple.

CAA needs to take down all the flawed stuff and just put up the CCC on their site today! This would mollify me for a long time and make me happy with CAA.

I think all ME websites should have the CCC as the centerpiece. It really is the crown jewel in a sea of sh!t.

I think Teej has a good idea about a CME- there really should be a solid one out there. Doctors read these- they have to read a certain number to stay licensed and they really read free ones as most are very expensive.

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.

 

[justinreilly]

Most of Your Donation to CAA is Wasted

When you contribute to CAA, most of it is going to programs which are largely ineffective and harmful:

2008 Sources of Revenue

Excluding government grants for specific projects

Public Support-----------------$ 1,407,911
Membership Dues------------- ----118,672
Corporate/Foundation Gifts---------37,702
Interest & Other---------------------10,360
Material Orders-----------------------7,338
---------------------------------$ 1,581,983

plus about $340,000 in government grants


2008 Use of Funds

Education and Awareness-----$ 890,608
Research-------------------------350,186
Public Policy---------------------235,845
Fundraising and Development--213,084
Management and General-------136,675
------------------------------$ 1,826,398

By percentage of expenditures, CAA doesn't do much research- 19% ($350k) in 2008. This is just 2x the amount that goes to CEO Kim McCleary's salary. I believe it is ramping up though due to a quite successful campaign to attract donations to its currently great research program.

49% ($891K) was spent on education and awareness. For this level of expenditure we have the misinformation contained on the CAA website (which it claims it doesn't have the resources to change) and the CAA/CDC CME (which claims, inter alia, that pwME have 'kinesiophobia'- a mental disorder causing panic about moving one's body and that the Reeves criteria are the international standard that should be used for diagnosis and research). We've also got the CFIDS AA using the term "CFS" everywhere. This inhibits awareness and education.

Public Policy gets 13% ($236K). The results of this are declining government funding for ME research- currently $3M. Erectile dysfunction gets $10M per year.

Reeves has been booted. I congratulate CAA for its part in helping this happen. CDC has improved over their old stance. On the other hand, CDC has had a sordid history with this disease which continues today. CAA has not done enough to end this.

CAA hasn't gotten the basics done right (other than research) for many years. And they haven't responded to years of constructive criticism from patients. Let's limit the harm they do until they change their ways. Then we can support them fully again. I hope you're with me!

Boycott CAA. Donate to WPI.

 

[justinreilly]

Edit: I have taken down this post, which was titled:
"Research-Restricted" CAA Donations Still Effectively Support Harmful Programs

There were inaccuracies in it. Thanks to Jennies Spotila for corrections. Sorry for posting incorrect info.