Discussion in 'General ME/CFS News' started by starryeyes, Dec 24, 2009.
I'm with you on this, valia.
Thank you Fresh Eyes and praise the Lord, perhaps now I can sleep, I feel as though I have been bashing my head against a brick wall all day.
I can only repeat that we are here for us, I will not say one word in defence of any organisation, if they have proved themselves they will not need defending.
we need your voice
Valia, please don't give up. I need to hear what you're saying and I'm listening carefully. I know many, many of us are listening carefully. Also, please take good care of yourself. When it becomes too much for you take a break, and then come back if you're able. I don't need you to argue, but I do hope you will continue to state what is true for you and what you think needs to happen and how you think we all can contribute. Some of us, and I speak for myself, are a little slow to really "get it," but we're trying. I'm trying. I think this is a really important discussion. Thank you for what you've contributed so far. I value your voice.
Tammie - I have removed the quote as it was obviously distressing for you to quote the offensive section.
Everyone - Please understand that what was removed was extremely offensive, not only to Tammie but to others.
I have not yet finished reading all the responses on this thread, so if someone already addressed this, and I am repeating it, sorry (but actually it bears repeating)..... 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.....I do not care if you believe differently than I do - that is not the issue here (& I have plenty of friends who do not share my beliefs)- I do care when you use His name as way to swear - that is disrespectful to all those who do believe and to Christ himself
Also, when you get this offensive you completely fail to get your point across - I absolutely agree that Peter White should never be quoted by the CAA, and I would probably agree with the rest of what you wrote, but after seeing f- this and f- that I stopped reading....and if this is how you relate to others who are already against us (ie in the Peter White camp) you are certainly not going to get them to change their minds by swearing at them.....at best they will not listen and at worst you will just convince them that they are rt - we are mentally unbalanced
ETA: I am the one who put the @@@ in place of some letters in a couple of words - I couldn't leave it as it was and quote it back....didn't really want to quote it back even with the changes, but didn't know if anyone would understand why I found it offensive if I didn't use quotes
re this thread as a whole, I am most definitely against using anything ever said by White, Wessely, or Reeves unless they want to apologize and completely change their words, actions, behaviors, etc
I find it very disheartening and discouraging that the CAA did this - actually what I feel is betrayed......even though they have made some mistakes in the past, I have been happy to have them pretty much on our side and have felt that they have also done a lot of good for us.....this does not change that, in my mind, but it does most definitely concern me, and if I see much more of this type of thing I may have to revise my opinion of them
I hope that someone has called them on this???
If so, I will wait to see what their response is, and I really hope that they try to rectify this
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!
Peter White, The CAA, and everything
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.
Tom Kindlon's testimony October 2009:
2) I think the CDC CFS program should have to cut its
ties with Peter White, according to its own rules
regarding external reviewers.......
Given that the only representative from the UK that the
CDC has invited to its CFS meetings since around
2001/2002 is Peter White, it looks very likely that they
have him in mind for both of these workshops. Also it
looks like he is involved in their Emory research and
may be involved in the CBT/GET. Both for the
CDCs reputation and Dr Whites, it would be better if
the CDC cuts its ties with him given he took part in the
Mary Schweitzer's testimony October 2009:
At the last meeting of the CFSAC, Dr. Reeves spoke glowingly of
his good friend Peter White, a specialist in autonomic nervous system dysfunction.
Dr. White is not a specialist in ANS dysfunction. He is yet another British
psychiatrist, part of a small group behind a program of cognitive behavior therapy
(CBT) and graded exercise therapy (GET) claimed to cure patients with the illness
chronic fatigue syndrome or, as they more often call it, chronic fatigue.
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, as described by these two passages:
The CFIDs Association believes there are lots of good ideas out there but few of them are making it to the CDCs research team. Its not that the research the CDC is doing is necessarily bad but what the group has missed out on by making the choices it has. The cost of doing another sleep study, a two-factor inflammation study, another CBT study , a metabolic syndrome study, is not participating in other research avenues. Kim noted that
Many research teams come to them with ideas for collaboration and theyre told Its a great project but we dont have the money to do that.but its all about opportunity costs. If youve got four or five million dollars and youre going to study unwellness in Bibb County, Georgia and youre going to collaborate with a psychiatry group at Emory and with Peter White on implementing the NICE guidelines in the United States then you cant do any other things because youve spent all your money on those things.
Over the past year Kim has interacted with CDC officials more than anyone else. I wondered whether the CDC just wasnt really concerned about how effective this program is. She stated
I dont know how to make it any more clear to them that they should be concerned. I sat with Sarah Wiley and Mike Miller and Steve Monroe in Senators Reids office a year ago.
But then something happened - the November External Peer Review.
I think they were ready to recognize the need to change before the Reeves comments yesterday about Peter White being a favorite sparring partner should have been enough to indicate the conflict of interest he had in participating as 1 of four people on the peer reviewNovember peer review. That clearly became their inoculation against any criticism of the program. .
Dr. White gave a presentation in Bergen on October 20, 2009. There were three slide presentations, in which he lists some of the causes as search for legitimacy, child abuse, illness beliefs and goes on to dismiss XMRV by saying that How you define CFS will determine what you find.
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?
How you define CFS will determine what you find.
Therein lays the problem.
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.
Koan posted this a while ago.
If everyone followed the eighth precept (in my signature line), very little moderation would be needed here.
THE FOURTEEN PRECEPTS OF ENGAGED BUDDHISM
the baby in the bathwater
Condemning the CAA because of one paragraph in a pamphlet may like seem a huge overreaction. While I don't think it's evidence of a psych takeover (!), consider that we don't have the unique history that our fellow sufferers in the UK have experienced with the psychological emphasis.
That perspective trickles down to primary care physicians and is especially tough on those who are severely afflicted. Friends in the UK for years have relayed stories to me about doctors refusing to treat them, or blaming them for not trying hard enough, and we know the stories people get involuntary placements in psychiatric facilities for refusing treatment. Many patients often have no recourse but to subject themselves to physicians who don't believe they're sick.
It's a very sensitive subject and an extreme reaction of seeing Peter White quoted in a CAA pamphlet is understandable.
I delved further into the CAA website to see what else they're saying about CBT/GET.
In 2001, the CAA issued a press release challenging a positive review of CBT/GET in JAMA.
That's a little different than what they said in the pamphlet: we know that exercise/activity helps to reverse many of the physical consequences of CFS.
An earlier article about exercise concludes that there is no consensus about recommendations for or against, that it may help a subset of patients and harm others, and that more research needs to be done. (ha!)
However, their more recent fact sheet, graded exercise is recommended:
So their position is unclear or perhaps it has changed over time? They really need to clarify this, perhaps put a position paper. Especially because of medical/political shenanigans in the UK.
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.
By the way, when did they stop using "CFIDS"?
That is so true.
I couldn't agree more.....and btw, my testimony in Oct '09 also mentioned White briefly and the UK school of thought more thoroughly....the only way that the CAA doesn't know about White is if they are not listening to any of us, not reading any of our written testimonies, not reading much research, not paying attention to what the CDC is doing, etc, etc, etc.....no way do they not know, and I think that makes the use of a quote by him in a Dr education pamphlet most certainly horrifying....like I said before, it is a betrayal.......I kind of want to send them a quote of their quote and the message, "Et Tu Brute?"
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:
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.
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.
Please see the Bad section of my first post of this thread.
I completely agree fresh.
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:
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.
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.
I'm glad to hear that because in your earlier post it sounded like you were saying you thought they were two different diseases.
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?
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.
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.
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.
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.
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?
That helps explain your stance on this and your view of the CAA. Thank you, Cort, for being honest about that.
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?
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.
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.
I completely agree with you here Cort. We need the CAA to be on our side.
I'm thrilled that you feel this way!
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.
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.
OK, so taking out all the weasel politics and the psyches tryng to take over the US, let's look at the use of exercise as a treatment for ME/CFS.
People are saying it helped them when it was done in a careful incremental way, starting very slowly and increasing as they felt able. Now that is fine and I agree it would be wrong not to mention it in a treatment pamphlet.
The problem is that up to half the people with a diagnosis of CFS will be made worse by exercise, often severely and permanently. And no one knows who they are before the program starts.
To say that they must only do what they can is naive and will not lessen the risks much as patients are desperate to regain their life and will want to push on. Even a small over shoot can bring on a serious relapse and negate any previous good. Patients also want to please their doctor so the risk is to push, not to do too little.
I think the only conclusion is that any advice to doctors MUST be framed that while gentle exercise may be beneficial the risks are very extreme so a program must be overseen very carefully and the patients must be warned to underestimate how well they are doing and to NEVER take chances.
Research must be rigorously done on all types of patient and as many symptoms monitored as possible. Objective testing must be used, not questionnaires and patients must be warned of the risks at all times.
To simply say that an exercise program may work is unfair to doctors as well as to patients. Would a caring doctor not want to know that his treatment may lead to a bedridden life?
It is also important for doctors to be aware that increasing fitness may be mistaken for an improvement in the disease. I myself, fell victim to that. I was doing more, felt much better but I had lost the cues that told me to stop. The damage to my system was permanent and I have not walked more than a few steps for over twenty years.
Dr Cheney says that CFS patients with diastolic heart failure do not need transplants because their illness forces them to lie down so the heart muscle doesn't fail. What will happen if we exercise instead of caring for our hearts?
This is all before considering the post exertional exacerbation of symptoms in ME which should be widely taught as few physicians are aware of it.
I cannot understand why a patient organization does not present the information in this way. That exercise helps people is taken as a fact in the medical world. It is something that doctors will think of for themselves; that patients will think of for themselves! Advocates for people with ME/CFS should be stressing the dangers involved as that is what doctors will not know, where ignorance lies and education would make things better for us.
Hey Cort, how about using the quote function or at least stating to whom you are replying?
Robin, I agreed with everything you said until this:
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.
Thank you so much Tammie. You rock Girlfriend!!
FWIW, I think McCleary was referring there to the CDC funding those studies, not the CAA.
But it does make it clear that the CAA most certainly knows who Peter White is and what he's about.
That's how I read it, too.
I'd like to read more about it.
I did read the pamphlet and thought most of it tried to make a distinction between good CBT and bad UK CBT but just did it very badly!
On the one hand we have Dr. Lapp saying this:
And then they have the inset with Peter White with no mention that he's 1) British 2) thinks patients are whiny somatizers! Huh? Your criticism is valid, but I guess we just disagree. I think it's more sloppy than subversive.
Here's their CBT fact sheet, which, like the pamphlet, is also a mutant hybrid of warnings that CBT is no cure coupled with conclusions from UK studies.
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!!
As Fresh Eyes pointed out, Kim was referring to the CDC funding in the article you cited. Kim also says:
The whole article is a pretty thorough criticism of the CDC!
You can see that the research that the CAA is currently funding excludes CBT. If they're truly conspiring with the Psych model promotors, wouldn't their research reflect that? Do you know of any UK style CBT papers they've funded previously?
Considering the CAA's actions in current research and advocacy, it's clear that they're not in bed Wessely and White. (Ew!) However, ignoring the abusive treatment of patients in the UK, and waffling about about CBT/GET in their literature is a huge failure of basic patient advocacy on their part. No, they're not a UK based organization, but, medical journals are international and patients are patients no matter where they live. (Imagine the Glaser Pediatric AIDS Foundation ignoring HIV in African children!) A critical review of the problems in the UK studies and a clear position paper would settle a lot of the ambiguity.
I hope the board members are reading this!
Robin, can you point me to any protocols, literature or studies that explain "good" CBT in relation to our illness? How and in what ways would it be different? I've looked for this type of info in the past and have not found it. Thanks.
You can also try a Google Site Search
Separate names with a comma.