The CAA Pamphlet to Educate Doctors

[starryeyes]

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.

Bell says: I use an informal kind of CBT on every patient I see. I don't refer them to outside CBT therapy.

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.

Peterson says he's: "not convinced of the efficacy of CBT, but it may be because I don't have a good practitioner in my area. It deserves to be tested, but sending patients to therapists who don't understand CFS isn't something I'd comfortably do."

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:

Pocinki: It's quite important for patients to be proactive in their care. Patients who sit around feeling sorry for themselves or waiting for someone to find a magic-bullet cure don't improve as a rule. Patients who continue to look for new treatments, stay optimistic about recovery and try to find new ways to cope with their illness tend to have a more positive outlook and a better prognosis.

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.

Lapp states that Exercise is one of the few treatments that predictably improves CFS, but it must be undertaken by 'starting low and going slow'.

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:

The aim of this therapy is to help you do more and feel better, since we know that exercise/activity helps to reverse many of the physical consequences of CFS.

This is a flat-out lie!! We need that statement removed as well as the following paragraph:

DO THESE TREATMENTS WORK? Since 1996 there have been eight published studies of these two treatments, compared to various other treatments. These studies were reviewed by four independent groups of scientists, who all concluded that active rehabilitation with CBT and GET are the most promising of all treatments in adult patients able to attend hospital clinics.

Approximately 6 out of 10 patients rated themselves as much better after either CBT or GET compared to before treatment, which was significantly higher than the proportion improving with the comparison treatments. About a quarter of patients were rated as recovered from CFS after utilizing CBT, a rate maintained after five years. This year a further study showed that CBT was also helpful in treating adolescents with CFS. No study has shown any pattern of harm caused by either treatment.

By Professor PETER D. WHITE
PROFESSOR OF PSYCHOLOGICAL MEDICINE
BARTS AND THE LONDON QUEEN MARY
SCHOOL OF MEDICINE AND DENTISTRY, ST.

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.

 

[fresh_eyes]

FYI I believe this is the pamphlet teej references above:

http://www.cfids.org/sparkcfs/clinical.pdf

 

[starryeyes]

Thank you fresh eyes. That's the one!

 

[Andrew]

Hi Teejkay,

The problem with the CAA rendition (like many others I've read) is they take a superficial approach. It is like teaching surgery by telling them where to cut, but without giving details about bleeding control, aseptic conditions, and how to close.

The beginning of the article should explain that CFS patients are not like healthy patients, and if an exercise program is done incorrectly, it can cause a setback that lasts days, weeks, or even years. It is not to be treated lightly. And then, the rest of the article should explain about budgeting energy, balancing exercise with rest, low impact exercise, etc.

I also think they should not quote UK studies in their article as research that shows exercise working. The Oxford guidelines eliminate all symptom requirements for chronic fatigue syndrome except for fatigue, and this means they are invalid for understanding CFS. And I think the CAA should point this out so doctors understand why some studies can be so misleading.

 

[_Kim_]

Has anyone taken a look at A Consensus Manual for the Primary Care and Management of Chronic Fatigue Syndrome put out by the NJCFSA? It's from 2002.

 

[starryeyes]

Hi Andrew,

Thanks for weighing in and good to see you here.

I agree with everything you said except for this:

The beginning of the article should explain that CFS patients are not like healthy patients, and if an exercise program is done incorrectly, it can cause a setback that lasts days, weeks, or even years. It is not to be treated lightly. And then, the rest of the article should explain about budgeting energy, balancing exercise with rest, low impact exercise, etc.

There is no correct way to do an exercise program when CFS is severe. I didn't know this before mine became severe myself but these last 10 years have taught me well. What you suggest works great for mild CFS but in the severe stages exercise is something that should not be promoted by patient groups or doctors. People with severe CFS who want to exercise on their own may attempt to do so anyway but we don't need someone "prescribing" it for us and it can cause us to relapse severely.

And due to all this untrue propaganda the public perceives us as weak and malingering. That's why our families and friends think this of us and treat us badly. That's why they keep telling us we need to exercise and that it's our own fault that we're not getting well. That's why if you're ever in a public institution like a nursing home you will be hounded by psychiatrists and exercise medical experts to work out and you will be told it's all your fault when you get worse from it.

I still get out on my bike when I can but I also know when I'm strong enough to handle that plus the horrible relapse I'll get from it. That's my choice not a treatment that's helping my CFS.

Thanks for the link Kim, I hadn't seen that before. It's too bad the New Jersey CFS Association isn't our Natl. Assoc. Their page: Fact Sheet for Caregivers of CFS Patients is very good from what I saw of it.

 

[Andrew]

There is no correct way to do an exercise program when CFS is severe.

I agree. There should be a section on severe CFS.

I think the bottom line is what is healthy and what can be done without setback. If a patient is confined to bed, he or she can develop serious problems such as blood clots in the legs or osteoporosis. The point is to evaluate what level the patient is at, and what (if anything) can be done to create body movement that is helpful but does not make the CFS worse.

 

[starryeyes]

Now we're in complete agreement. I do leg lifts, sit ups and upper body workouts and dance on my bed sitting down as much as I can.

 

[Cort]

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.

Staci Stevens is an exercise physiologist who has CFS; she and Snell and Vanness pioneered the repeat exercise protocol that found verifiable metabolic dysfunction in a significant percentage of patients.

Most treatments don't work for most patients but some treatments really do for some patients. Does that mean the CAA should leave them out?

While you're horrified by Dr. White's statement I would submit that the rest of the pamphlet is really very good. As the CAA does they took advice from a broard range of physicians from Lapp to Peterson to Klimas and yes, to Dr. White. Most of them had decades of experience working with CFS patients - honestly I trust their judgment over any one patients. I doubt that many physicians have true ME patients in their practice; ie came down with it during a localized epidemic.

Honestly I doubt that it matters. After several months the ME patients look exactly like chronic fatigue syndrome patients; the paralysis, if present, drops away as do the severe muscle twitches (if present), the headaches usually calm down and they suffer from post-exertional malaise, emotional lability, concentration problems etc.

Many patients have found the graded exercise - done correctly can be very helpful. I have certainly found that - five minutes up and five minutes down etc - works. No activity at all does not. I read of patients who were bedbound who are now walking (probably not very well) because of graded exercise. If you ever want to look into the horrors caused by deconditioning I think you'll find that its something to be avoided at all costs. Throw those problems on top of CFS and you're really, really in bad, bad shape.

I never expect to agree with everything that anyone puts out. I thought it was a very, very good document! I would note as well that its an attempt to cover all aspects of CFS treatment- that would take a small book. Everybody's going to find something they think should have been in there.

 

[Martlet]

At the risk of agreeing too much with Cort, I have just read through the pamphlet and I have to say that I like it. My experience is exactly that - my experience - but what they say in the pamphlet really mirrors the treatment and advice I have received.

First of all, right after a clinical diagnosis had been made, I was referred to the psychiatric clinic on the base where I was diagnosed. Far from resenting it, I welcomed it, thinking that if there was some great psychological underpinning to the disease, perhaps they would be able to help me. What in fact happened was that the psychiatrist was amazed that I was not depressed, not because he thought CFS was caused by depression but because, as he said, people who are ill for a long time - with anything - are generally depressed. Is that not more or less what the CAA is saying here?

Thats not to say patients arent justified in their emotional response to such a devastating illness. Dr. Renee Taylor, a licensed clinical psychologist and professor at the University of Illinois at Chicago, explains: Patients are justified in their feelings of anger about the imposed changes and losses of CFS. Most forms of anger emerge from a fundamental experience of loss. Losses with CFS are profound, multifaceted and not
limited to social, economic and functional losses.

The reason I was not depressed (although I had my moments of grieving) was that I was very prayerful and incredibly optimistic, but I still needed help making emotional and physical adjustments, so I saw the psychiatrist willingly as we worked through different approaches. It was he who persuaded me to use the wheelchair I had been provided before crashing, rather than waiting for a crash. That doctor was a huge help to me.

Again, the pamphlet says:

Clinicians on our panel encourage patients to explore various approaches, including counseling with a psychologist who understands CFS or participation in a support group.

It was my internist who taught me/talked me into/whatever working in short bursts. Five minutes, ten minutes, whatever did not make me crash, then to take a break, then to be active again. No-one suggested how long I should be active for at a time. He encouraged me to find my own level, then increase it if I felt comfortable. I believe this was a life-saver, because anyone who lies in bed, even a perfectly healthy person, will become deconditioned very rapidly.

The pamphlet:

Klimas believes exercise is critical, and she prescribes a four-pronged program. First, she suggests a good stretching regime or yoga. Next, she encourages patients to focus on modest strengthbuilding exercises. Your muscle mass sets your metabolic rate, and lots of CFS patients have a very low metabolic rate and have gained weight, so building muscle mass is important. This doesnt mean bench-pressing 200 pounds. It can be as simple as lifting a can of soup and gradually increasing the number of reps. The third focus is on strengthening the central core muscles. If you have a stronger abdominal wall, you dont pool as much blood in your vena cava and abdomen, so central core strengthening helps. She encourages patients to buy an introductory Pilates tape and do 5-10 minutes, then later in the day do another 5-10 minutes. The fourth prong of her exercise program is aerobic exercise. While some patients are scared of aerobic exercise, Klimas has found that patients tolerate it better if they do it for 5 minutes, then rest for 5. Upright aerobic exercise can be done in little chunks. For patients who dont tolerate an upright position, swimming or a recumbent bicycle are possibilities.

Now back to the psychiatrist. It was he who tried various medications to help with sleep. It was a hilarious exercise at first, as he tried the various antidepressants, only for me to call him and say something like, "No, that one wired me until I swung from the lampshades." Eventually, we settled on a combination of restoril and doxepin, but not until I had given other meds a good shot. I've now been on those same meds for years and have found that as long as I get a good night's sleep, I do better during the day. I still get some slippage, where I prefer to sleep from the wee hours until late morning, but in general this medication - prescribed by a psychiatrist - has been good for my symptoms.

The CAA:

When it comes to symptom management, clinicians agree that they treat sleep first. Thats not only because 70-95% of CFS patients experience
sleep dysfunction, but because sleep problems exacerbate other CFS symptoms. (See article beginning on page 32.) I start with sleep, says Klimas, because if you dont manage the sleep right, you dont get far. Its
difficult to untangle the threads of the illness until sleep dysfunction is addressed.

So, what I see in this pamphlet is a good, comprehensive management plan for what is an as-yet incurable chronic condition.

 

[gracenote]

a few quick thoughts

At the risk of agreeing too much with Cort, I have just read through the pamphlet and I have to say that I like it. My experience is exactly that - my experience - but what they say in the pamphlet really mirrors the treatment and advice I have received.

Thanks, Martlet, for sharing your experience and for sharing it as your experience. Here is a bit of my experience.

I think many, many of us have had entirely different treatment and that may be why the quotes you mention above feel so different to us.

I don't have time to appropriately respond right now, but I wanted to add a few thoughts to this thread while I'm thinking about it.

The psychiatrist I saw told me that if I took Prozac I would be better. That's what I needed, he was sure.

One of my doctors told me that his girlfriend (or fiance) had been tired but she started jogging. Maybe jogging would work for me, too.

My endocrinologist, who was treating me for Hashimotos, kept telling me that I would be better soon by following his protocol. He was saying the same thing six years later when I was no better, but he insisted there was no such thing as chronic fatigue syndrome.

A therapist I went to see to help me "cope," kept trying to point out that my thoughts were leading me to feeling worse. I spent many sessions telling her that it was my exposure to molds, or not being able to sleep, or other circumstances, that had led to my relapses. I didn't put it together for quite awhile that she was a cognitive behavioral therapist. She worked with people who were ill. In her defense, there were at times thought patterns that were leading to exacerbation of my symptoms (still are), but it was frustrating to spend most of the therapy hour feeling defensive.

I think it is especially difficult for those of us who live alone and who have to use what little concentration we have to keep a roof over our heads and food (and how complicated is that!) in our bellies. To feel already overwhelmed just maintaining our lives and then be told to manage an incremental exercise program just feels unthinkable.

Right now, leaving my home for anything to get groceries, to go to a doctor's appointment is too much. I can't imagine adding in a weekly appointment to anyone, especially to someone who thinks that I could do yoga or maybe even swim! I think Nancy Klimas is great, but this I cannot fathom. I would like someone to help me with my weekly washing hair/shower.

I would not want any of the health care professionals that I saw before or am seeing now to be thinking that some of the advice you quoted above would be helpful for me. Even though I understand the idea of deconditioning, I need to feel like I have someone on my team who "gets" how costly any activity is and who gets how complicated it is for me to manage basic self-care.

Fortunately, I now have a doctor who does get all this. And fortunately, he has never suggested to me that I involve myself in any kind of exercise program. He is working really hard to help lower my infectious load so that my body can get just the tiniest bit of a break.

I think information targeted to doctors who treat some of the more debilitated CFS patients is needed.

That's all for now. I have got to get on with my day.

 

[valia]

Most treatments don't work for most patients but some treatments really do for some patients. Does that mean the CAA should leave them out?

While you're horrified by Dr. White's statement I would submit that the rest of the pamphlet is really very good. As the CAA does they took advice from a broard range of physicians from Lapp to Peterson to Klimas and yes, to Dr. White. Most of them had decades of experience working with CFS patients - honestly I trust their judgment over any one patients.

Please! Please! Please! Cort do not try to tell people that this is OK!

The CAA should most definitely leave out anything said by Dr. White, why are they quoting him? One of the most feared perpetrators of abuse to CFS sufferers in the UK.
If CFS people don't know who he is CAA most certainly do, can't you see what they are doing, introducing you to him gently like this.

I am deeply sorry that I am half brain dead, I would like to say a lot more but can't.

BRING BACK CTOT he could tell you how dangerous this is.


and Cort I am beginning to doubt which side your bread is buttered?



And BTW Happy Christmas to everyone here!

 

[Martlet]

Gracenote

Thanks for sharing your experience. I understand that people have been treated abysmally and that I was very fortunate in having the doctors I did. I volunteered to run a support group (from my sofa) not long after I was diagnosed and heard some awful stories, but don't you think that perhaps your doctors would have benefited from the pamphlet?

For example, Dr Lapp says:

Thats why finding health care professionals who believe CFS is real and dont equate it with depression is so important, and may actually qualify as a coping strategy. A toxic relationship is born when the doctor doesnt believe the patient, or the patient cant trust the doctor,

If doctors did nothing more than take that to heart, it would bring improved care for many. If a doctor believes the patient, then he or she will surely work within the patient's stated limitations.

The pamphlet needs to be viewed in its entirety, IMHO, since some parts will help some people while other parts help others.

Anyway, enough for tonight. Just taking a quiet hour which is now almost over.

 

[PoetInSF]

Pocinki: It's quite important for patients to be proactive in their care. Patients who sit around feeling sorry for themselves or waiting for someone to find a magic-bullet cure don't improve as a rule. Patients who continue to look for new treatments, stay optimistic about recovery and try to find new ways to cope with their illness tend to have a more positive outlook and a better prognosis.

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 don't know if the quoted statement is all true or not, but it's self-evident to me that those who seek solution is more likely to find solution than those looking for validation. That's not to say that it's applicable to everybody; obviously, some of us are so debilitated that they don't even have enough to take care of the business of living. But it may be applicable to those of us who improved enough to walk a few blocks without triggering post-exertional sickness.

I had a mini crash yesterday and today, thanks to shopping two days ago. I felt more achy, fatigued and shitty than usual even after sleeping 9 hours on restoril. But I managed to drag myself out for previously scheduled bi-daily walk and coffee, and I'm feeling whole lot better.

Happy Holidays!

 

[Dr. Yes]

Folks, I'm tired. I just spent the better part of the day reading and thinking about and responding to the issues on the "Psych lobby" thread, which deal with how all of us will be treated in the near and more distant future. So I felt a sinking feeling reading some of the responses here to a SINGLE issue teej brought up that should have been a no-brainer.

Where have all the efforts of activists gone in the last two decades? Why do I see Peter White being defended by the founder of the best web forum I know of for ME/CFS? Why is he now echoing the CDC's method of excluding ME from CFS although this is the Phoenix Rising ME/CFS forum? Why are fellow sufferers on the eve of 2010 still arguing for exercise in ME/CFS, without any stated understanding for the MANY, not tiny minority, who have been destroyed again and again by attempts at even careful exercise programs, or simply do not have the energy reserves to do even the mildest exercise and still be able to bathe, or eat? Have none of you had the same awful experiences that the majority of ME/CFS patients have had with doctors and family? And if you are lucky enough not to have, have you no sense of impropriety in ignoring the majority who have?

While you're horrified by Dr. White's statement I would submit that the rest of the pamphlet is really very good. As the CAA does they took advice from a broard range of physicians from Lapp to Peterson to Klimas and yes, to Dr. White. Most of them had decades of experience working with CFS patients - honestly I trust their judgment over any one patients. I doubt that many physicians have true ME patients in their practice; ie came down with it during a localized epidemic.

Cort, I responded to one of your posts in the "Psych lobby/ APA/WHO" thread so I will refer you to that regarding your unusual (outside of the CDC, perhaps) take on ME. I was also in a better mood there. (weak grin). But I can't let your comments on Peter White pass.

Yes, I am "horrified", as you put it -- I am horrified by Dr. White's inclusion in a physician education resource still put out by the largest CFIDS advocacy group in my country. I recommend that you read more about him. Part of me knows that you know a lot about Peter White, but part of me still clings to the hope that you somehow never read about him, and what he really believes (outside of his "PR outreach" propaganda). In that hope, I direct you to the thread that deals with White in particular and to the related thread(s) that deal with the UK psychosomatic school. Orla, Tomk, and others have done a splendid job of documenting these "doctors'" views... But I've read even worse (with references).

You know, there are a lot of folks from the UK on this forum. They have written in here again and again about their horrible experiences and frustrations with the UK's scandalous "psychosomatic" approach. They're all over this forum, describing their fight against the Peter Whites of this world. Are you telling them to take him more seriously? To consider his opinions, no matter what ideology created them? I can't believe I'm hearing this, here of all places. And, I fear, neither will they.

Peter White does not believe that you, Cort, have an organic disease. He does not believe that the sick members of the CAA have an organic disease. His protocol is based on that belief. For that reason alone, it is MINDLESS to include him in any favorable light in any CFS advocacy literature. It is also unethical.

To make matters worse, he not only believes that this disease is all in your head, but he has established ties to Bill Reeves in the CDC so we Americans can't just say "tough break for those UK guys". A number of his colleagues are on the somatoform disorders revision group for the DSM-V; they are the ones trying to make it possible to add a somatoform disorder diagnosis to any physical disease.

And I cannot let you get away with saying "honestly I trust their judgment over any one patients". First of all, Teej was not speaking as one patient only. She was speaking, as I do, from around twenty years of learning how this illness has affected other patients, many of whom have been ignored even by some of the "good" doctors you mentioned. Second of all, doctors are not deities. I ought to know; I come from a medical family and was headed that way before this thing cut me down. Even the "good ones" have their dogmas, their egos, their politics/ambitions, and a certain kind of professional blindness. They tend to hear what they want to hear from their patients, and disregard anything that doesn't fit. If Nancy Klimas was not quoted out of context there (and I think one of us should contact her about it and show her this pamphlet), then she is ignoring the full experience of the majority of ME/CFS patients with exercise. Believe me, it can happen, even to one of the "good ones". Thirdly, I hope to God you were not including White in the list of doctors you would trust over any one patient. I don't think you did, but it was not clear.

To the CAA - at least some of you guys know about the UK psych lobby and about White. Your lovely spotlight on him, beaming photo and all, cannot be explained away... Someone in the CAA wants to "rehabilitate" him for American consumption. I can't for a second believe most of you even knew about this, least of all approve of it. But once you do, it is your responsibility to fix this. We are growing tired of asking and pleading. I welcomed jspotila and bjsmith to this forum. I was really glad they were here - I still am, for now; I really thought we had a chance to eventually make the CAA into something all of us could be proud of. But now comes a simple, seemingly easy breezy test. It's time for action - now. If you can't disregard a man who thinks your own disease, your whole organization, is based on psychosomatic delusion, then something is terribly wrong, wouldn't you agree? It would make the CAA an existential joke.

And no, for anyone who seems confused, this is not all about a pamphlet. Removing Peter White's contribution to that CME (or the CME's contribution to Peter White?) won't fix the problems that have been growing surrounding the CAA. This merely represents the last straw. People (not just me) have suffered the impact of years of rotten physical rehab advice and psychological abuse from medical professionals. Our own advocates should damn well not be contributing to that, neither via bad information nor a reluctance to convey some very good information.

If any of you still disagree with this position, or still think that pamphlet (etc) is fine, please PM as many people in this forum as you can (including me) and ask for their experiences and reaction to this pamphlet. Maybe you just don't know how the same disease affects many of us, and how damaging it is to us when fellow PWCs make such unqualified statements as yours. But I think to begin with you merely have to search the threads here to find more than enough.

I want you all to know that I have no intention of offending you, but this had to be said in an attempt to get you to understand the full gravity of the situation. I urge you to check out the information in the threads on Peter White and the psychologization of CFS. Another eye-opener I can suggest is this set of videos on YouTube (actual training video for medical students about how to deal with ME/CFS patients): http://www.youtube.com/watch?v=bvArXvqAMiA

Well look at the time! Merry Christmas, true peace, and better health to you all.

 

[glenp]

Not always accurate diagnosis



"Where do you see yourself 5 years from now?" A realist would answer that question somewhat different than an optimist would. It is a question that is often used in a diagnosis of depression.

Please be aware there are some psychiatrists that can help us, but here where I am, I only know of one, he specializes in geriatrics so I will definitely try and get a referral to him when I am 65, in the meantime zilch.

glen

 

[starryeyes]

Staci Stevens is an exercise physiologist who has CFS; she and Snell and Vanness pioneered the repeat exercise protocol that found verifiable metabolic dysfunction in a significant percentage of patients.

Then she of all people should know better. But she can't know better if she hasn't actually studied the true patient population for decades and/or experienced severe CFS that always causes PEM herself.

QUOTE=Cort; Most treatments don't work for most patients but some treatments really do for some patients. Does that mean the CAA should leave them out?

I don't think you understand the repercussions for including studies that "prove" that PWC get better from GET and CBT. It looks like you believe this yourself though. Do you?

QUOTE=Cort; While you're horrified by Dr. White's statement I would submit that the rest of the pamphlet is really very good. As the CAA does they took advice from a broard range of physicians from Lapp to Peterson to Klimas and yes, to Dr. White. Most of them had decades of experience working with CFS patients - honestly I trust their judgment over any one patients.

I can't believe you're not horrified that White and his lies about CFS are included in this pamphlet. It's insidious of the CAA to pretend to be on the side of patients while they're simultaneously putting out propaganda that harms and kills patients. Perhaps you're not familiar with the stories about this. I do not trust the CAA's judgment about this at all. Unless they change all of their literature about CFS so that it does no harm to patients, I never will.

QUOTE=Cort; I doubt that many physicians have true ME patients in their practice; ie came down with it during a localized epidemic.

This is because of the watered-down definition put out by the CDC and the UK.

QUOTE=Cort; Honestly I doubt that it matters. After several months the ME patients look exactly like chronic fatigue syndrome patients; the paralysis, if present, drops away as do the severe muscle twitches (if present), the headaches usually calm down and they suffer from post-exertional malaise, emotional lability, concentration problems etc

On what planet??! Oh I wish Cort. I wish this was the truth. It is not. Not at all. Consider yourself extremely lucky if this has happened to you and I pray that anyone that has this happen with ME never relapses again.

I am astounded that you think ME is separate from CFS. They are used interchangeably and they are both considered to be the same illness by patients with ME/CFS. The people with only chronic fatigue have something else wrong with them.

You have said yourself that you don't have the "fluey" symptoms of CFS. Perhaps you don't have CFS. I think you said that you have MCS.. is that correct?

QUOTE=Cort; Many patients have found the graded exercise - done correctly can be very helpful. I have certainly found that - five minutes up and five minutes down etc - works. No activity at all does not.

In your experience Cort, not the average PWCs. Count your lucky stars Cort. The truth is, I'm very happy for you. Seriously, I mean that. Even though we disagree on many things I am glad you have found exercise to help you. I wish that it would help all PWC but Cort, it doesn't. I once thought it did too and I was so wrong and I am so sorry for once not believing other PWC about this. Now I know better.

QUOTE=Cort; I read of patients who were bedbound who are now walking (probably not very well) because of graded exercise. If you ever want to look into the horrors caused by deconditioning I think you'll find that its something to be avoided at all costs. Throw those problems on top of CFS and you're really, really in bad, bad shape.

Cort, I just don't think you understand. For many of us with severe CFS, any exertion makes us much worse. What you think is deconditioning is actually CFS taking its toll on people. I don't think I can convince you of this but at least we know now why we disagree.

Cort wrote: I never expect to agree with everything that anyone puts out. I thought it was a very, very good document! I would note as well that its an attempt to cover all aspects of CFS treatment- that would take a small book. Everybody's going to find something they think should have been in there.

I'm not going to hold it against the CAA if they don't add things that I feel should be in there because they help explain CFS to the doctors but unless they remove the egregious portions in their educational literature that harm CFS patients then they do not represent me and in my mind, they do not represent patients who suffer from ME/CFS.

It sounds like you're saying that all of the children and adults with CFS who are in coma-like states and have to be tube-fed are in that situation because they didn't exercise. Is that what you are saying?

 

[meandthecat]

Living on our little wet island on the edge of an ocean we in the UK have looked to the US for things that are bigger and brighter. Usually 10yrs ahead we can see in you the direction we are headed, for better or worse. But there is a devious subtlety to an old culture, an art to twisting words so that they become a poison.

Probably the best informed me/cfs forum, I feel intimidated, my experience parochial but this thread disturbs me. The Wessely school is evil. It fronts for much larger interests and I see the UK as an experiment in the future of global health care. You can't 'cherry pick' from this tree all the fruit is toxic.

I have been fortunate and can still work but my efforts have been self-directed based on an intuitive sense as any engagement with the NHS is fraught with danger. I would so like help but there is none here, the well has been poisoned any doctors who try to help are branded as heretics and marginalised and persecuted.

I may sound paranoid but the UK has suffered over 20yrs of this crap from Mnchhausen onward, it goes far beyond ignorance it is now endemic.

 

[starryeyes]

At the risk of agreeing too much with Cort, I have just read through the pamphlet and I have to say that I like it. My experience is exactly that - my experience - but what they say in the pamphlet really mirrors the treatment and advice I have received.

Martlet, I'm glad that CBT and GET have worked well for you but they have harmed PWC and the belief that they are a necessary treatment for CFS has been and continues to be extremely harmful for PWC.

QUOTE=Martlet;First of all, right after a clinical diagnosis had been made, I was referred to the psychiatric clinic on the base where I was diagnosed. Far from resenting it, I welcomed it, thinking that if there was some great psychological underpinning to the disease, perhaps they would be able to help me. What in fact happened was that the psychiatrist was amazed that I was not depressed, not because he thought CFS was caused by depression but because, as he said, people who are ill for a long time - with anything - are generally depressed. Is that not more or less what the CAA is saying here?

No that is not what the CAA is saying here. They are saying:

CAA Pamphlet: Patients who continue to look for new treatments, stay optimistic about recovery and try to find new ways to cope with their illness have a better prognosis.

and

DO THESE TREATMENTS WORK? Since 1996 there have been eight published studies of these two treatments, compared to various other treatments. These studies were reviewed by four independent groups of scientists, who all concluded that active rehabilitation with CBT and GET are the most promising of all treatments in adult patients able to attend hospital clinics.

Approximately 6 out of 10 patients rated themselves as much better after either CBT or GET compared to before treatment, which was significantly higher than the proportion improving with the comparison treatments. About a quarter of patients were rated as recovered from CFS after utilizing CBT, a rate maintained after five years. This year a further study showed that CBT was also helpful in treating adolescents with CFS. No study has shown any pattern of harm caused by either treatment.

By Professor PETER D. WHITE
PROFESSOR OF PSYCHOLOGICAL MEDICINE
BARTS AND THE LONDON QUEEN MARY
SCHOOL OF MEDICINE AND DENTISTRY, ST.

QUOTE=Martlet; The reason I was not depressed (although I had my moments of grieving) was that I was very prayerful and incredibly optimistic, but I still needed help making emotional and physical adjustments, so I saw the psychiatrist willingly as we worked through different approaches. It was he who persuaded me to use the wheelchair I had been provided before crashing, rather than waiting for a crash. That doctor was a huge help to me.

That's great that this psychiatrist helped you. What does that have to do with the false propaganda that the CAA is including in it's literature? Also, you are very lucky that you are doing so well. Just using a wheelchair does not generally improve CFS for most people.

QUOTE=Martlet It was my internist who taught me/talked me into/whatever working in short bursts. Five minutes, ten minutes, whatever did not make me crash, then to take a break, then to be active again. No-one suggested how long I should be active for at a time. He encouraged me to find my own level, then increase it if I felt comfortable. I believe this was a life-saver, because anyone who lies in bed, even a perfectly healthy person, will become deconditioned very rapidly.

CBT and GET have harmed and killed patients. What you're talking about is the right kind of CBT not White's and Wesseley and Reeves kind. Earlier in the pamphlet this was explained thoroughly and I put it in the Good section. This is not what I'm objecting to.

QUOTE=Martlet Now back to the psychiatrist. It was he who tried various medications to help with sleep. It was a hilarious exercise at first, as he tried the various antidepressants, only for me to call him and say something like, "No, that one wired me until I swung from the lampshades." Eventually, we settled on a combination of restoril and doxepin, but not until I had given other meds a good shot. I've now been on those same meds for years and have found that as long as I get a good night's sleep, I do better during the day. I still get some slippage, where I prefer to sleep from the wee hours until late morning, but in general this medication - prescribed by a psychiatrist - has been good for my symptoms.

I am not objecting to PWC seeing psychiatrists. There are some good ones out there. You are fortunate to have been able to see one.

QUOTE=Martlet So, what I see in this pamphlet is a good, comprehensive management plan for what is an as-yet incurable chronic condition.

There are many good things in the CAA pamphlet as I have pointed out. However, they are harming patients who have CFS with the bad propaganda that their information materials contain as well.

QUOTE=Martlet I volunteered to run a support group (from my sofa) not long after I was diagnosed and heard some awful stories, but don't you think that perhaps your doctors would have benefited from the pamphlet?

I would want my doctors to read the good parts of the pamphlet if the CAA took the destructive parts out. I hope and pray that none of my doctors have ever seen the educational literature put out by the CAA but unfortunately they all act like they have.

This is just one of the educational pamphlets put out by the CAA. There are many others they put out that contain the same kind of propaganda that damage PWC and is responsible for separating parents from their own children in the UK and in the USA and indicting parents with Munchausen by Proxy.

 

[valia]

Martlet, I'm glad that CBT and GET have worked well for you but they have harmed PWC and the belief that they are a necessary treatment for CFS has been and continues to be extremely harmful for PWC.



No that is not what the CAA is saying here. They are saying:



and





That's great that this psychiatrist helped you. What does that have to do with the false propaganda that the CAA is including in it's literature? Also, you are very lucky that you are doing so well. Just using a wheelchair does not generally improve CFS for most people.



CBT and GET have harmed and killed patients. What you're talking about is the right kind of CBT not White's and Wesseley and Reeves kind. Earlier in the pamphlet this was explained thoroughly and I put it in the Good section. This is not what I'm objecting to.




I am not objecting to PWC seeing psychiatrists. There are some good ones out there. You are fortunate to have been able to see one.


There are many good things in the CAA pamphlet as I have pointed out. However, they are harming patients who have CFS with the bad propaganda that their information materials contain as well.



I want my doctors to read the good parts of the pamphlet. I want the destructive parts taken out. I hope and pray that none of my doctors have ever seen the educational literature put out by the CAA but unfortunately they all act like they have.

This is just one of the educational pamphlets put out by the CAA. There are many others they put out that contain the same kind of propaganda that damage PWC and is responsible for separating parents from their own children in the UK and in the USA and indicting parents with Munchausen by Proxy.

Thank you Teejkay, for putting into words what I can't.

I will bet that your doctors will only read and retain the destructive parts.
I have been referred to a cbt/get clinic, after showing my doctor the results of a survey showing that many people who started out with moderate ME became severely disabled and bedridden, incontinent etc....he still said "well I should give it a go it can't hurt"

Firstly it would hurt my soul to be told I have false illness beliefs

Secondly I am alone and cannot afford to take the risk that a treatment such as GET would make me worse (bedridden)