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.
I am very sorry to hear that your doctor is only writing “fatigue” on all of your medical reports. I live in CA and right now my doctors do a great job writing down all of my worst symptoms every time I see them and they are very open to articles I give them to help them understand CFS better. I count my lucky stars and I do worry about what will happen when they retire or stop practicing.
So many doctors I have seen have treated me abysmally. If I lose my husband and I'm still at this severe level or worse, I too will have to go into a nursing home of some kind and I know millions of others are in a similar boat as me. I can only pray that we can convince our American patient organization, the CAA, to do it's job in correctly educating the medical professionals. Unfortunately, I feel that they are sabotaging us completely right now and have been doing so for two decades.
Your voice is important here Valia. We want to hear what you have to say. (((Hugs))))
Andrew you are the voice of reason. I completely agree with you.
I'm sorry that I misunderstood your particular experience Martlet but it seems to me that you are fine with CBT and GET being pushed onto PWC. You wrote:
CBT and GET help some people to actually improve, therefore, just as with other therapies, it should be included as an option.
This isn't what's happening to people. You say you're aware of the horrifying stories and repercussions of how PWC are being perceived and treated and yet you seem to think that it's just fine for our American patient advocacy group to be promoting the British version of CBT and GET.
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.
No, It is the pamphlet that's harming us. They interview doctors who treat us right and then pages later they contradict their own conclusions and post info from the likes of Peter White from the UK and say things like we have to exercise to get well and CBT helps our prognosis. As if these two therapies are all we all really need to get well.
Martlet wrote: Which propaganda are you referring to here?
Please see the
Bad section of my first post of this thread.
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?)
I completely agree fresh.
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.
That would be wonderful! But they need to revise all of their educational literature. They have numerous other pamphlets online that say similar things. This page of theirs has several articles like the pamphlet:
http://www.cfids.org/sparkcfs/health-professionals.asp
Some are well done like the Depression one and others like the other Exercise one further down have Klimas again saying things that can be used to harm patients especially when combined with the misinformation put out by White and other doctors and the CAA itself in the first packet.
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.
And we know that Reeves who heads the CFS program at the CDC and the CAA have been having numerous meetings with Wessely and White in the UK and I don't think it's just for tea parties and crumpets.
Cort wrote: They (and I) believe CFS should be referred to as ME/CFS.
I'm glad to hear that because in your earlier post it sounded like you were saying you thought they were two different diseases.
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.
I am very glad to hear you say that Cort. Can you help us get through to the CAA to ask them to change it?
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.
If they leave that in then I don't have a huge objection as I don't think that patients are being forced to do acupuncture. However, I am speaking for the patient population that I've met and/or read about. Please point us to the ME/CFS patients who have been helped by acupuncture. And also, keep in mind that with a relapsing/remitting illness it may not be the treatment that allowed patients to become better.
The total lack of science in the packet concerns me as well. If the CAA can show us studies that prove that acupuncture works for ME/CFS then putting this in the packet makes sense otherwise it does not.
Cort wrote: To turn the CAA into an 'existential joke' because you disagree with one section of their pamphlet doesn't make sense.
It may not make sense to you but I completely understand where Dr. Yes is coming from and I do feel that it totally negates the validity of the CAA. It makes them seem like they're truly our enemy. Are you aware of how Dr. Yes is being treated by medical personnel? He's almost being forced to exercise now, right here, in the USA. If I was in his shoes, I'd be completely distraught and extremely upset. These are destructive emotions that make us much worse. Well, they make many of us PWC much worse.
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.
I do agree with this but we have a right to feel that the CAA is not on our side for many reasons. I don't want to go into them here as we have a thread already in progress about that. This thread is about this one packet put out by the CAA and it is damaging to us. The CAA does appear to be talking out of both sides of their mouths.
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.
This pamphlet is at fault for promoting the idea that CBT and GET are the two treatments that patients with ME/CFS need in order to get well. It isn't only White who states this. This isn't only about him being included. Please reread the
Bad section I wrote about the pamphlet in my first post on this thread. The CAA completely contradicts themselves later in the packet from what they say earlier. This is damaging to us and I do believe this packet is directly responsible for the mistreatment and harm done to PWC.
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.
CBT and GET are not treatments for CFS but packets like this make it seem as if they are. This packet states that all CFS patients need GET and CBT and some drugs. Do you really believe that these things make CFS better?
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.
That helps explain your stance on this and your view of the CAA. Thank you, Cort, for being honest about that.
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.
I object to so much more than just White being included in this packet and I've spelled it all out in the first post here. This packet states that all CFS patients need GET and CBT and some drugs. Do you really believe that these things make CFS better?
Cort wrote: Because they, [the CAA] like everyone else, makes mistakes.
This isn't a mistake! They are not just making one mistake. They completely contradict their earlier stance that CBT and GET harm us within this packet. For now I am just focusing on this packet. If they can't change this then I don't trust them at all.
Cort wrote: because contrary to the UK most of the research in the US has never gone for behavioral studies.
I am pretty sure it has. I do know that after the CDC and the CAA shut down Defreitas's finding of a retrovirus in us in 1991 no researcher was able to get a grant to try to find the retrovirus that's in us. That's why it took the WPI which is privately funded to do it.
Cort wrote: I want them to thrive - and adjust. I'm glad that Board Members are interested and listening to the patient community.
I completely agree with you here Cort. We need the CAA to be on our side.
Cort wrote: I agree that having Peter White up there was a real boner and that the organization has things to work on.
I'm thrilled that you feel this way!
Cort wrote: We're really not into banning here.
I'm really glad. I think this kind of debate and discussion is so essential to us all getting the proper support we need. Thank you again Cort.
That is very helpful.
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!
Excellent points Tammie. Thank you for bringing that up here. I recall this kind of stuff when I read it but I'm too brainfogged to remember it on my own.