The CAA Pamphlet to Educate Doctors

[jackie]

Hi Beckster...just saw your reply! YIKES is right!

It was in 2000. I had/have an HMO (have for years) but was in the process of applying for SSD as I hadn't been able to work for the previous two years. (I use the HMO Insurance that we have from my husbands job - instead of using Medicare for Health Ins., until he retires anyway!)

The primary care Doc I had at the time said that my HMO Insurance was suggesting I be sent to a Pain Control Clinic - and the Doctor of the clinic chose RFTC as my treatment - lucky me! My HMO keeps a pretty close watch on our health (when my husband was dx'd with Diabetes...we had a call (unsolicited) within the week offering us special Diabetes classes! Within a few weeks of seeing my ID doc I'd received a call from a phone-in Nurse offering a program to monitor my health at home! stuff like that! - pretty freaky how well we are watched!)

Anyway, when I was doubtful about the Pain Clinic my doctor insinuated that my refusal might be viewed as a reluctance to try things that might help me...and might reflect adversly on my application!

The disability folks had all my records (which thankfully were very comprehensive) so I knew they noticed what doctors/treatments I was using. I was pretty naive to be "bullied" the way that I was...although no one ever really forced or threatened me! This new world of illness and doctors and treatments and tests was "uncharted territory" to me...and I reluctantly went along for the ride!

It's not that I'm afraid to take chances (I've been on longterm high dose Antivirals for nearly 4 years now. I DO know the risks for this protocol and I'm a good sport about it!)...but I didn't feel I had a choice in the matter back then.

My Disability case appears to be a bit unusual in that I was accepted on the first "try"...no exam or hearing. Just on the basis of medical records from my Neurologist, Rheumatologist, Primary Care Doc, even a Pulmonary Specialist - which included labs, CT's, MRI's, EMG's, BAER, Lumbar Puncture...all done over the course of a year.

I can't imagine that having my nerves fried had any bearing on their decision - although I did report how much worse I was after having this done! I still wonder if I didn't end up with Arachnoiditis as a result (as the burning pain has never stoppped)...but when I researched it at the time, I realised it would have been impossible to prove....and no good would have come of trying!

Hey Koan! You're sweet! Not to worry...I just get a little sqeamish when anything starts nosing around my back quarters nowadays...makes the hair on my neck stand on end!

(Sorry all...if I hi-jacked the thread!)

Up to my old tricks....jackie:Retro wink: (smilie's back)

 

[rebecca1995]

Jackie,

..but I was so vulnerable and I was taken advantage of, physically hurt, and emotionally traumatized. I would certainly hate to be in a similar situatuion again with enforced "therapy" - of ANY kind!

I'm so sorry to hear of your experience--and your above quote really sums up the road we're all going to be heading down unless the CAA adjusts its position on CB"T" and GE"T". (I use quotes because for most of us they're the opposite of therapeutic.)

I think the CAA needs to ask itself how its position should be determined. Should it be based on guidelines from the CDC? From a small group of UK psychiatrists with vested interests? On some flawed studies that used the Oxford criteria and hence excluded patients with abnormal medical tests? Or should this position be based on the real experiences of real patients?

 

[Andrew]

I wish I had enough money to hire someone to write a book about CFS and exercise. The first chapter would talk about who should not exercise, such as people who work all day or are bedridden. But add the possibility of doing simple movement or stretching routines, if possible. But not required. And for bedridden people, simple movement routines to keep from getting blood clots, etc. Also, assisted moving routines, where someone else helps you move (if available). The second would cover how to balance activity with crash prevention, energy management, and the unpredictability of some changes in conditions. The third chapter would show set of exercises, starting with simple movements that can be done lying down. Then easy ones, moderate ones, etc. Every set of exercises would include a rest period. IOW, it would be right in the instructions for every exercise, not a sentence on the first page. Also, tips on what to watch for so you know how much you can exercise in a given day. Not sure what the next chapter would be.

 

[jackie]

Rebecca...AMEN to what you said!

Here's my two-cents...The treatments which have been proven (by both PATIENT ANECDOTES and studies etc.) to be the MOST beneficial and the LEAST detrimental should have the more prominent place in the pamphlet....with a spot for many other modalities of treatment (established and experimental).....and with the appropriate disclaimers and warnings. It certainly doesn't sound as though CBT/GET should be FIRST to appear, right?

So MANY patients have spoken out against CBT/GET...from their PERSONAL experiences - why should they NOT be listened to??? Why is this so difficult to understand? What is behind this stubborn refusal - this reluctance to take us at our WORD?

We need someone to pay attention to WHAT we're SAYING (finally) and to back us up. Doing the "right" thing in this case could be so simple, IMO. So why are we not being listened to? That's a REAL question...not rhetorical.

j (just FULL of QUESTIONS.......and frustrated!

BTW...I did CBT - I have a cassette tape from the very nice Psychologist to prove I did...and the very HEALTHY mental attitude I STARTED out with - in a very UN-healthy body...STILL!

I was sent to this Therapist in part because I made the "mistake" of telling the Marquis De Sade that I sometimes FELT like "slitting my throat" when the pain got too bad (who doesn't!?)...and the Marquis wrote in my files that I was suicidal! HA!

 

[MEKoan]

So MANY patients have spoken out against CBT/GET...from their PERSONAL experiences - why should they NOT be listened to??? Why is this so difficult to understand? What is behind this stubborn refusal - this reluctance to take us at our WORD?

This is the million dollar question, isn't it.

I understand why people who haven't experienced this first hand don't get it. I really do. I don't think I would get it either.

However, our organizations are us! US

We need Andrew's book! Cut him a cheque from the CAA coffers!

 

[starryeyes]

((((((Jackie))))))

I'm overwhelmed. It's just blowing me away that in 2000 in CA you were coerced into such an abusive program. That could have been me! I applied for disability in 2000 myself. I hope that sharing your story here has at least been somewhat healing for you. I feel so bad that you went through all that.

tee

 

[RestingInHim]

i admit i haven't read all of this thread...just don't have the brain for it. but i do so appreciate those who know how to advocate for all of us and are able to do so.

i am blessed to have people in my life who don't judge me...and a doctor who is understanding. but some do judge at times, and it always seems to be regarding exercise. it's defeating in the attempts i make to do what i can to keep my body working. i don't even know what cognitive therapy consists of...must be a form of behavior modification? it would be great to have a glossary on this forum for those who don't know all the lingo.

i'm rambling. thanks for all of you who fight for all of us.
resting

 

[starryeyes]

Hi RestinginHim,

CBT mostly consists of therapy sessions where you are taught to stop your false illness beliefs. It's basically brainwashing people with CFS to realize that they are imagining their illness. Those that promote it also say we should never get biological testing because we are all psychiatric cases.

On a happy note, I got this email today:

Dear tee,

Thank you for your sharing your concerns with us regarding our website. The link from the Spark! Health Care Professionals page to the CDC’s website was removed. We will keep your other suggestions in mind as we continue to make additional changes to our website.

Best,
Kim

Jennie has also assured me that all email written to the CAA gets read by the proper party there.
So start your engines and get writing! :Retro smile:

 

[RestingInHim]

thanks for the explanation tee. sounds like caa is responding. that is good news indeed.

brain is gone. out for the night!

 

[Samuel]

Much more to be done.

 

[beckster]

Jackie,
the more you explain the more YIKES it gets! Sorry!
freaky being WATCHED= uh HUH. Yikes

 

[beckster]

Samuel,
what Serum Repository is this, where is it?

 

[jackie]

Beckster.....Reading my posts must have been like watching a train wreck (you have to keep reading out of morbid fascination, no matter how gruesome! Sorry! No more hair-raising descriptions!:Retro redface

And I'm going to start calling you "YIKESTER"....instead of BECKSTER!!!


jackie:Retro smile:

 

[rwinsmom528]

Non-compliance and SSDI

One thing that caught my eye was the claim that SSA withhold disability payment to those who refuse CBT/GET. (Since teejkay is from the Bay Area, I assume it is SSA). I'm pretty sure that it is not that case. If it is, I'd be the first one to contact Pelosi/Feinstein/Boxer.

If a patient doesn't follow a doctor's treatment recommendation, it will count against them in getting approval for SSDI because SSD will say that the patient would have gotten better if he had followed the doctor's recommendation. If the doctor does not recommend CBT/GET in the first place, then not doing CBT/GET will not count against the patient. Compliance with doctor's recommendations/prescriptions is a big deal to SSD. Plus, a doctor may not be supportive of a SSDI claim if the patient is non-compliant.

 

[jackie]

rwinsmom528...Exactly! Thank you. (your "bold" is so important to keep in mind!)

jackie:Retro smile:

 

[_Kim_]

One thing that caught my eye was the claim that SSA withhold disability payment to those who refuse CBT/GET. (Since teejkay is from the Bay Area, I assume it is SSA). I'm pretty sure that it is not that case. If it is, I'd be the first one to contact Pelosi/Feinstein/Boxer.

If a patient doesn't follow a doctor's treatment recommendation, it will count against them in getting approval for SSDI because SSD will say that the patient would have gotten better if he had followed the doctor's recommendation. If the doctor does not recommend CBT/GET in the first place, then not doing CBT/GET will not count against the patient. Compliance with doctor's recommendations/prescriptions is a big deal to SSD. Plus, a doctor may not be supportive of a SSDI claim if the patient is non-compliant.

Thank you rwinsmom528 for spelling this out. Not complying with CB"T"/GE"T" (thanks rebecca) can prevent us from getting disability approved in the first place.

 

[beckster]

Good Gracious Gumdrops, who knew alla this wasa gonna on in our owna country. Thank heavens for websites!

Yes, Jackie, yikes yikes and more yikes. The Yikester

 

[starryeyes]

The Spark! page has been updated: http://www.cfids.org/sparkcfs/health-professionals.asp

The article from 2006, "Clinical Care for CFS" is not linked on that page. A link to the Canadian Clinical Case Definition has been added.

Well, it's now the last day of February 2010 and I just clicked on the link you gave us here Jennie and it's still got the 12 Step CFS Toolkit up which is http://www.cfids.org/sparkcfs/2008/toolkit4.pdf and when you click on it you're first greeted by Reeve's face... just to remind the CAA, he's no longer in charge of CFS at the CDC. Then when you search for CBT (Cognitive Behavior Therapy) it says:

The goal of CBT is to help patients cope with their illness and change perceptions and behaviors that can contribute to symptom expression.

Can you see me pulling my hair out?

It goes on:

While CBT is frequently prescribed as a coping strategy, it can also improve fatigue and activity levels. Optimally, CBT can help your patients better adapt to the impact of CFS and improve their quality of life.

Some patients are resistant to this therapy because they mistakenly believe health practitioners who prescribe CBT believe CFS is purely a psychological illness. Educating patients about the role CBT can play in helping them learn to manage activity levels, stress and symptoms may help overcome this reluctance.

See the fact sheet on CBT in this toolkit for more information.

Further down the page it says:

Of the CFS treatments studied to date, two have demonstrated the most promise so far.

one of which is CBT and it goes on to sing the virtues of CBT.

CBT is listed a lot more than this throughout this 12 page document. In fact, the whole document appears to be riddled with this inaccurate and harmful belief that CBT can actually help us.

I do hope everybody understands that Graded Exercise Therapy (GET) is part of CBT. Part of our supposed "wrong beliefs" about CFS is that exertion makes us worse. When you're in a CBT program, you will be expected to push through your crashes and do more than you really should and you will be expected to do some kind of exercise and to be increasing it as time goes on. You can ask Kati about that. She's in the program now and is concerned that she wouldn't get her Disability if she doesn't comply.

The CAA is teaching doctors and other medical personnel that we need CBT and by default, GET in order to get better. The CAA is responsible for harming patients and exacerbating CFS in many patients. This is wrong. The CAA needs to either Delete this CFS Toolkit or overhaul it and take out all of the lies they are perpetuating about CBT and GET in CFS.

In order to quickly find the parts of the pamphlet that speak about CBT, go to the pamphlet and then click on Ctrl and hit the F key at the same time and a Search Box will pop up. Type "CBT" into the Search Box and click on the right arrow. This will bring you to the first "CBT" in the text. Click on the arrow again and again and it will continue to take you to all of the subsequent times "CBT" is written.

 

[jspotila]

We've had great a great conversation through private messages, tee, and I appreciate the frustration you and others feel over these materials. With all due respect, however, the Association is not calling the patients "liars."

I have previously linked to materials on the Association's main website that make clear that CBT/GET are not cures, and must be used in the context of the real physical symptoms of CFS. As I have explained before, the Spark website and the CFS Toolkit were both created under the public awareness contract funded by CDC. That contract is in its final stage, and the Association will be making a determination about all these materials at the end of the contract.

 

[starryeyes]

Well I feel very frustrated about all this but I really appreciate you responding so quickly Jennie. I'll take the word "liar" out but I do feel like that is what they are saying about us. That we are lying about being physically ill and lying that our symptoms are worse after exertion. Anybody promoting CBT is saying that.

I am glad that these materials are up for review but like someone pointed out to me the other day, it would be easy for the CAA to Delete these materials right now then they could work on taking out Reeves and White and CBT. We're fine with the rest of the information so then they could put them back on and they'd be much improved and we'd all be happy. I would even become a member again.