I'm with you on this, valia.
I am so tired now I can barely think, I just want to say that the only ones here that don't have an agenda are us the patients/sufferers. . . . If something was working for us we would not be complaining, I thought this forum/group was here for our defence . . . I really don't want to argue anymore about this . . .
I find this post EXTREMELY offensive.....and I am not normally very easily offended - the language in general is not necessary, though I understand you are upset & could deal with some of it....however, using my Savior's name in vain, on His birthday, no less, is totally uncalled for and very, very offensive.....
When conducted by skilled rehabilitation professionals knowledgeable about the illness, graded exercise and CBT may help improve function in some patients. The danger lies in assuming that all patients can benefit.
" Behavioral therapiesare no more a cure for CFS than they are for cancer. They offer a way to help those with chronic illnesses better cope with their symptoms," says Kimberly Kenney, President and CEO of The CFIDS Association. "They are also not appropriate for every patient. Post-exertional malaise, an exacerbation of symptoms lasting more than 24 hours after exercise, is a hallmark symptom of CFS. Therefore, behavioral therapy has the potential to cause severe relapses, especially when not administered by skilled professionals."
A paced, graded approach to exercise and activity management is recommended to avoid overactivity and to prevent deconditioning.
Tammy, I have edited that section from the post you refer to.
Just a gentle reminder to all members, we are called to show respect for one another even when we vehemently disagree, and I think that respect has to extend to respecting one another's religious views and sensitivities.
Some of the patient testimonies at the last few CFSAC meetings about the ever-growing association of the CDC with Peter White. If the CAA was paying attention to these meetings they would surely know who Peter White/Simon Wessely are by now, if they hadn't before. And certainly any interaction with some of the international groups would have made contact with the Wessely/White school of thought impossible to ignore.
So I don't really understand how our Advocacy group doesn't know who Peter White is. I mean, they SHOULD have known for years, if they were truly "advocating". This is who the enemy is, for goodness sake! This is where the boomerang of political CFS is coming from.
Peter White sits on the External Peer Review Panel for the CDC's Chronic Fatigue Syndrome Research Program. The CAA know who Peter White is, and if they don't, why not? This is an unbelievable conundrum, to me. This is where ignoring history gets us into foul waters.
But then again, Cort's article at http://aboutmecfs.org/blog/?p=553:
clearly indicates that the CAA does know who Peter White is.
Not knowing who Peter White is clearly, clearly denotes an utter lack of understanding of the boomerang politics of CFS, and therefore an utter lack of understanding of what is being done to us and how much trouble we are in. It horrifies me to think that we are being led by a group who does not even know who the enemy is.
Am I really to believe that the CAA does not know who Peter White is? And what's more horrifying? That they don't know? Or that they DO know?
Hi Teejkay, what a surprise! to get a response I mean. I am one of those people who is normally ignored by the group, don’t know why really, perhaps I just don’t accept bull when I read it.
I am from the UK, and have been fighting off CBT/GET and anti-depressant drugs since I first became ill 2 years ago.
I know at times I may appear to have a very cynical attitude but believe me this is only due to my experience of the medical profession over the last 2 years, I have been diagnosed with ME by my rheumatologist and neurologist, I have also had a positive western blot for Lyme disease, but my GP still writes “Fatigue” on all of my reports.
I mean what the hell, he doesn’t use any other term CFS or ME just plain “Fatigue”, so yes I am cynical, I have given him reams of info about ME and Lyme disease, he simply bundles it up and sends it back to me.
OK! I may sound paranoid but if White is in cahoots with the CDC this is what you have to come.
CBT and GET help some people to actually improve, therefore, just as with other therapies, it should be included as an option.
Martlet wrote: Right. And as you say, the pamphlet explains this, so it is not the pamphlet that is bad, but those doctors who promote something else.
Martlet wrote: Which propaganda are you referring to here?
Fresh eyes wrote: I am horrified that the CAA has included as an expert a man who surely we all agree is one of the great villains in the world of ME/CFS. (Or perhaps I'm wrong, and we don't all agree on that?)
Fresh eyes wrote: I frankly expected the CAA (and CAA supporters) to respond to this criticism with something along the lines of, Oh, that pamphlet is old, we didn't know back then what a nut job White is...We'll revise that pamphlet and remove him immediately.
Martet writes: If you let the likes of White in you will soon have the same problems that we have, there are many people here that hide themselves and their illness away for fear of being sectioned for false illness beliefs.
Cort wrote: They (and I) believe CFS should be referred to as ME/CFS.
Cort wrote: I think there's probably some real learning to do on my part and the CAA's part on Peter White. Tom did show me some awful statements Dr. White made. It was probably (certainly?) a bad idea to include him in that pamphlet.
Cort wrote: Teejkay was objecting to the CAA mentioning some of the treatments (acupuncture) that didn't help her at all. But I know of people who have been helped by acupuncture. I know people who've helped by herbs. Just because she hasn't been helped by those treatments doesn't mean they shouldn't belong in the brochure - that was where I was coming from.
Cort wrote: To turn the CAA into an 'existential joke' because you disagree with one section of their pamphlet doesn't make sense.
Cort wrote: Yes, the CAA probably did make mistakes and Peter White was the wrong person to have on that brochure and Dr. Klimas probably should note more that lots of people need to start doing less (she actually does frequently!) but the best way to deal with that is through education not withdrawl.
Martlet wrote: my feeling is that CAA's pamphlet is not what's at fault here, so much as bad doctors who may well only take from it what they want.
Martlet wrote: I still don't see how CAA - or anyone else - can completely ignore CBT/GET when all those who have dedicated their lives - and risked their reputations - on our behalf recommend it with certain qualifications.
Cort wrote: I absolutely do not know alot about Peter White! I only have so much time. I've avoided CBT like the plague - note there are no articles on it on my website. Note that there are alot of articles on other things.
Cort wrote: My problem is in attempts to color the entire organization because of that mistake or even a couple of mistakes. Thats not good for any of us.
Cort wrote: Because they, [the CAA] like everyone else, makes mistakes.
Cort wrote: because contrary to the UK most of the research in the US has never gone for behavioral studies.
Cort wrote: I want them to thrive - and adjust. I'm glad that Board Members are interested and listening to the patient community.
Cort wrote: I agree that having Peter White up there was a real boner and that the organization has things to work on.
Cort wrote: We're really not into banning here.
samual wrote: The following search does not strike me as requiring resources beyond the capacity of the CAA to perform. Why would it be?
Tammie wrote: btw, not only did the "studies" on exercise only use fatigue in their criteria for INCLUSION (leaving out all the other diagnostic criteria), but at least one of the ones done by the CDC also EXCLUDED any patients who had PEM - so of course the results were skewed....those who are made worse by exercise were not allowed to participate in studies attempting to "prove" the benefits of exercise on CFS....that's like doing a study on a new med and excluding anyone who fails to benefit from it and/or has side effects!
But you're right. CBT/GET is not part of their research or advocacy efforts which reflect a physical cause for CFS, and one paragraph in a pamphlet or a line in a fact sheet is not enough to indict them.
Tammie wrote: btw, my testimony in Oct '09 also mentioned White briefly and the UK school of thought more thoroughly.
This proves that the CAA is funding the psychiatrists in the UK who kill and harm ME patients.
Robin, please read more about this issue. This isn't just about one paragraph in a pamphlet or a line in a fact sheet this is about the CAA talking out of both sides of their mouths. One side is to placate us into believing they're really on our side. The other is making deals and paying for studies that harm and kill PWC. This packet put out by the CAA is pretty much split evenly in half between the two opposing beliefs about treating CFS.
Dr. Lapp said:In my opinion CBT is widely but unfairly maligned because of the British approach, which presumes that CFS has no organic basis, and is therefore contradictory to most patients perspectives and current science.
This type of CBT assumes somatic symptoms are perpetuated by errant illness beliefs and maladaptive coping.
Kim McCleary said:Now [the CDC] want to study CBT- well, thats been studied to death by NIH funded investigators and by investigators in the UK. We dont need more data on that.
Quote from Robin: I'm doing a CBT protocol, currently, and I'm in a bad relapse and it's helping me cope. But, it's created on the basis that CFS is a biological illness that imposes limitations which must be respected in order for healing and improvement to happen. Good CBT exists, but it must well definied!!