Yes. My blood is boiling. This is the educational pamphlet that our CAA gives out to doctors and has online to educate them about CFS and I am just livid. http://www.cfids.org/sparkcfs/health-professionals.asp If you don't have the time or energy to read all of this please scroll to the bottom of my post and read the last quote and the bold print that I wrote. The CAA is harming us and I pray we can do something about it. fresh eyes posted the link to this CAA pamphlet in the post directly below this one. Not everything in the pamphlet is bad. There's a lot there that's good. That's what makes it all the more insidious if you ask me. Below I've written about my impressions of the CAA educational pamphlet. The Good and the Bad aspects of the pamphlet that I list below do contain some shades of gray but I tried to separate them to make it easier to understand how I feel about the pamphlet. Good: The doctors they chose to interview: Levine, Bell, Klimas, Peterson, Lapp, Straus, (I don't know Pocinki, Bateman or Taylor). Unfortunately I'm now not sure about Klimas as you can see in the Bad list. Team approach to treatment can be a good thing. Centers of Excellence. No single treatment protocol works. They acknowledge the losses we face, the stigmatization and the social oppression. The history of CFS ie. Cheney Peterson. They say exercise exacerbates symptoms rather than relieves them. (Unfortunately, further down they promote GET and CBT and so do some of our trusted CFS specialists.) The suggestions they make for exercise probably aren't going to work for most PWC. However, there are some of us who were or are able to benefit from exercise without experiencing PEM. I was able to exercise with mild CFS for 11 years so I would encourage a patient to try if they feel they can handle it. But when CFS is severe then exercise can be very detrimental to us and in many cases patients report that exercise or pushing themselves made their CFS go from mild to severe. There are studies now that show what's happening in the bodies of patients with CFS when we exercise and that should be included in the exercise section of this pamphlet. The exercise recommendations for CFS patients on this pamphlet were written by Snell, Stevens and Vanness whom I have never heard of. Have any of you? In other words, I don't think they know or understand enough about CFS to know what they're talking about but I can see why they're suggestions make sense to them because they do make sense for other illnesses. They do explain that CBT is controversial. They acknowledge that the British have made CBT a contentious issue for us. I couldn't Copy and Paste Klimas's statements about CBT, you can find them on the 5th page down on the right side. I understand what she's saying and I know she's stating this viewpoint based on her patients with CFS so I'm okay with it. I'm not okay with what she says further down in the pamphlet.. that made the Bad list. Lapp, Bell and Peterson weigh in on CBT too and I agree with their statements as well. Our BIG problem right now is that Reeves, White and Wesseley are using CBT and GET as weapons against us. I put that on them and their minions. But the doctors interviewed in this pamphlet do explain the situation and the conundrum of CBT for CFS. I trust Dr. Bell and I know he's an amazing pediatrician who truly cares about his patients. In fact, he was just about to retire when XMRV was discovered and now he's asking all of his former patients to contact him. I gotta hand it to the CAA. They chose all the right doctors to interview about CBT for CFS. It's not their fault that Wesseley and Reeves and many psychiatrists are using CBT and GET in ways that harm CFS patients. I wrote that before I had read on. The rest of my Good List: The section on the 9th page down that explains how sensitive we are to meds and lists them is well done. Dr. Bell's quote on p.10 is excellent. Lapp encourages patients to play computer games etc... to keep our brains working and I totally agree for those patients who can. The Striving for Health section at the bottom is very well written and it's wonderful that the CAA points out that PWC can remain disabled despite doing everything possible to recover. They also point out that we all respond differently to therapies. Bad: Back that bus up!! What???! That is not true however I still think it's good to stay optimistic about recovery and try to find new ways to cope with their illness But no... sorry, this does nothing for our prognosis. I should know! And I know all of you do too. I've been on CFS forums or read them daily since 2000. That's 9 years which qualifies me for a Doctorate in assessing CFS and the patients. I've actually had the best attitude possible since 1985 when I first came down with CEBV and started reading books and pamphlets at health food stores about CEBV and then CFS, so that's 25 years of studying CFS. My CFS is now severe and I'm mostly bedridden and I know there are millions more with CFS who are just like me. This is totally untrue. What is true is what I stated above about exercise for some PWC. Any kind of exertion usually makes PWC much worse no matter how graded or gentle it is. Believe me, I wish this wasn't the case. I think one reason we have our backs up is because they imply that we only know how to Push and Crash but that isn't so. Some patients might do that but the majority of us don't because we can't and also because we learn what works and what doesn't on our own. We don't like being treated as if we're too dumb to figure out how to stop relapsing. Believe me, CFS has a mind of it's own and when it worsens on us it is not our fault. Most of us do everything we can to help our bodies perform as well as possible. For many of us NOT exercising takes tremendous willpower and massive discipline and this should be acknowledged in this pamphlet. Many of us were formerly very athletic. Keep in mind that CFS can be very mild for some people and they can handle exercising. Just like any illness, there are levels of severity. In the more severe stages of CFS any exercise can exacerbate our symptoms and cause major relapses that last for days, weeks, and months. I think it's imperative that this information be included in this CAA pamphlet. The way CBT is written about in the sidebar on the 6th page down is controversial. It all depends on the practitioner and the patient. If the practitioner truly understands CFS then this method of CBT may help some CFS patients cope with this devastating illness better. However, most of us are capable of figuring out how to manage CFS on our own and from support on Message Boards and that helps us save our few precious spoons for more important things like eating well and showering. This should also be explained in this CAA pamphlet. This CAA pamphlet should also include a link to the Spoon Theory and explain that even though it's written by a patient with Lupus it applies to PWC as well: http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf And while they're at it, this CAA educational pamphlet should talk about how we don't look sick but we are suffering from a severely debilitating and crippling disease that lasts for the rest of our lives. GET is mentioned again in the same sidebar and this time they wrote: This is a flat-out lie!! We need that statement removed as well as the following paragraph: Well, these 8 published studies need to be put before the next CFSAC and explained and examined. Who published these studies and what was their incentive? Where are these greatly recovered patients? Show us the money!! What do the top CFS specialists have to say about this that were interviewed in this pamphlet one and two pages up? I want to hear what Levine, Bell, Klimas, Peterson, Lapp, Straus have to say about this. They sure didn't state anything like this here or anywhere else that I've ever seen. Well Klimas does further down unfortunately. This makes my blood boil!! How about yours? I cannot believe the CAA included this paragraph about these studies in this pamphlet. I know it's not true and we all know the irreparable harm a paragraph like this can do to us as patients. If this is the way that the CAA feels then they do not represent ME or any of the CFS patients I know. This is propaganda that will feed the psychiatric machine that is now about to change CFS to a completely Somotoform disorder in the U.S.A. just like it is in the UK and we can thank the CAA. This needs to be changed. If it's not, I fear we are going to be coerced into doing the British brand of CBT and GET in the U.S. Patients in the U.S. now are being made to feel badly if we can't exercise. Just wait. This can get a whole lot worse for us. I hope the CAA is going to make this right. It would be so easy for them to just take out the damaging parts of this pamphlet. They also owe us a huge apology for perpetuating these myths to the doctors that have been treating us for the past 20 years. No wonder the best doctors I could find in the San Francisco Bay Area keep telling me to exercise. I keep telling them I wish I could and they look at me like I'm a liar. They also seem to think I'm exaggerating about how sick I am and how much pain I'm in. In fact, pretty much everybody in my life treats me this way and I know other PWC are being treated this way too. The CAA has known all along how badly we are all being treated. I just don't get it. They are getting paid huge salaries to do this to us! They also completely contradicted themselves if you look at the Good list. Early on in the packet they state that exercise can make us worse. The rest of my Bad list: On the 7th page under Treatment, Dr. Nancy Klimas describes an exercise "program" that I know for a fact can make me much worse and I know it can make millions of other PWC worse too. I don't know what to say that I haven't already said except that I am crushed to see Dr. Klimas saying this of all people! See my paragraphs above about exercise if you're not sure why this is so upsetting. I don't believe she means us harm but this kind of advice does harm patients. I would never go the clinic she's building now that I know she believes this because ANY exertion I do now makes me way worse. And yes, I keep trying on my own but that isn't what I feel she is saying. She is telling doctors that we NEED to increase our exercise but that can make patients much, much worse. She should know that and state it. Pocinki goes on to say that without exercise recovery won't happen. I think they are very confused. Patients exercise more IF they're symptoms remit. That is a huge difference from what they are saying. They are also responsible for perpetuating myths about CFS. We're not bedridden because we're scared to move. Oh.. I just give up! I do have to say, I kept wondering why Dr. Klimas keeps calling CFS chronic fatigue. She's even naming her center that. Now it makes sense. What doesn't make sense is the last lecture she gave that's on video. She seems to totally get it there except she keeps calling our illness cf. I am actually feeling very confused about where she really stands. Perhaps the problem is that many of Klimas's patients do not have ME but have cf. That would explain why they might be getting better from doing CBT and GET or she may not be aware of how CFS relapses and remits with no treatment at all. Many of us have gone into remissions that last for years and if these doctors were treating us at the time they would think it was because of their treatments. :tear: I'm surprised that Pocinki says acupuncture helps us. I don't think that's true and I tried with the best acupuncturist I could find for over a year. It does help people with cf though. The 12th page down has a section about the Gilbert clinic which uses a combination of Chinese and Western medicine. I've tried all that for over a year and it did me no good at all and I know many other PWC who say the same thing. I don't think an ad for the Gilbert Clinic belongs in a CFS educational pamphlet for doctors.