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Time for the Big Talk. How's the CAA doing?

CBS

Senior Member
Messages
1,522
CBS- not sure if you're responding specifically to my comments. The kinesophobia material doesn't sound like it would have come from Drs. Lapp or Bateman, but of course, I don't know for sure.

Not with respect to kinesophobia (I don't know Dr. Lapp but would have little doubt that this isn't Dr. Bateman's view of CFS patients). Just saying that I in some of the conversations I have had, it has been enlightening to discuss positions on a number of different recommendations and perspectives.

These docs get such a huge range of patients and conversations with them are always filled with caveats and qualifications with regards to perspectives on THEIR typical patient or the subset of patients they are referring to with any one comment. For instance, it is my impression that Dr. Bateman sees a much broader range of patients than does Dr. Montoya (type of clinic plays a role as does finances) and while there is overlap, they have their own areas of emphasis. Patients seeing each of these docs seem very pleased and well cared for. That's what I was referring to as breadth of experience (much more so than I will ever have).

Each of these two docs has over a decade of seeing CFS patients and they seem to share a language in spite of their very different practices. That said, I know that they would probably not agree on everything (may be more a matter of emphasis but I suspect not in all matters). I think that could be said for any two of the small group of dedicated, well respected and prominent CFS docs. I imagine that the meetings where policies are set can be quite interesting.

As I said earlier, I feel strongly that patients bring a depth of experience that informs this conversation. In the past, we haven't been involved in this conversation to the degree that we are presently. A lot of people have stepped up and at the same time Cort created a very powerful tool. My hope is that as advocacy groups and leading CFS docs are approached, we make sure to do so in a manner that conveys real urgency while also indicating a desire to understand (they know we're angry, they might be a bit surprised and relieved if on more occasions we asked how something came to be in a way that doesn't come off as a condemnation).
 

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
What Does Everyone We Haven't Heard from Think?

There has been a lot of fleshing out of this topic over 1,000+ posts. I've pretty much said what I've got to say. Thanks to everyone who has contributed to the discussion. This topic is of interest not only to the regular posters here, but to the ME/CFIDS community at large, as reflected in the 33,000+ views of this thread so far. I'm really interested in what those who haven't posted much or at all yet think, even if it's just to quote a post and say "I agree" or "I disagree."
 

CBS

Senior Member
Messages
1,522
I don't think it should be forgotten that some patients involved in running patient organisations can also have quite "broad" exposure to CFS also.

I have seen enough by her to think Lucinda Bateman might place too much emphasis on exercise programs in an education program for my liking.

I am sure that working in a patient organization broadens one's experience. I'm not sure that it is the same as seeing 20 patients a day and having a case load of hundreds.

As for Dr. Bateman's view of exercise, she'd have to speak for herself but I know that she encourages the most disabled of her patients to try and at least do some stretching to help stave off the worst effects of inactivity.
 

Dolphin

Senior Member
Messages
17,567
I am sure that working in a patient organization broadens one's experience. I'm not sure that it is the same as seeing 20 patients a day and having a case load of hundreds.

As for Dr. Bateman's view of exercise, she'd have to speak for herself but I know that she encourages the most disabled of her patients to try and at least do some stretching to help stave off the worst effects of inactivity.
Not sure what your point is with the second sentence.

And a private doctor may not see all types of patients. And few are exclusively CFS and may somewhat merge their CFS and FMS advice for example.
 

Dolphin

Senior Member
Messages
17,567
My question with regard to kinesophobia or behavioral therapies or anything like that is do you think ME/CFS patients are human beings?

That's a serious question. Do you think ME/CFS patients are, by and large, normal human beings or do you think that somehow this disease plucked out a superhuman subset of humans who are immune to all of the missteps and mistakes that the general trend of humanity makes when faced with any really difficult situation?

I think people with ME/CFS were probably normal human beings some of whom, when faced with such a difficult situation probably make errors of judgment. I know I sure have. The army doesn't throw recruits in the middle of a battle without extensively retraining them first. Nobody trained any of us in how to deal with a completely life altering situation. People are going to make mistakes suggesting that we aren't going to do that is, to me, untenable.

Therefore, if its Dr. Lapp and Dr. Bateman experience that some patients have a kinesophobia then I'm not surprised! I would suspect some people to develop that. Most of the times in my journey through CFS I've overdone it physically but there have been times I have definitely under done it on the activity front and it really did me temporary harm. Juggling activity levels is not an easy process after all, the nature of this illness - with the sometimes postponed reaction to exercise, makes it difficult, sometimes, to figure out what is causing what.

After reading the CME I think doctors will look at this illness from all angles. The kinesophobia section is one small section of the document that only applies to one set of patients. While patients may not get that I think doctors understand that it's probably a normal reaction that some people will have and that it is to be expected.
You ask are ME/CFS patients human beings.

The same sort of question can be asked about doctors - are they human beings?

They can be influenced by all sorts of factors and thinking patterns.
If they think patients should do an exercise program but a patient doesn't want to, they can label that response in their head as kinesiophobia.

It doesn't mean that is necessarily a good term for the patient's response.
 

CBS

Senior Member
Messages
1,522
Not sure what your point is with the second sentence.

And a private doctor may not see all types of patients. And few are exclusively CFS and may somewhat merge their CFS and FMS advice for example.

In her December 2nd OFFER presentation, I asked Dr. Bateman two questions; one was about the over prescription of activity for CFS patients and the second was about her practice - what percentage of CFS patients she sees and are there subgroups that she finds useful in treating patients. She responded that in her most disabled patients she asks them to at least try and do some stretching as the effects of severely restricted activity (such as that shortening of ligaments and a resultant exacerbation of disability, etc.) is not insignificant. As for the impacts of exercise on CFS patients, she was the doctor that sent her CFS patients to Drs. Alan and Kathy Light for their exercise study. I won't claim to know where she stood before those studies but I get the sense that at present, she is amongst the best informed as to the exaggerated negative impact that exercise can have on CFS patients.

In practice, she sees a range of chronically fatigued patients (typically able to work but little else), CFS patients and fibro patients (hers is not a general practice). She's not shy about saying that the CFS patients are her passion. In what I have heard from her, she's quite clear on differing advice for the different groups.
 

Dolphin

Senior Member
Messages
17,567
In her December 2nd OFFER presentation, I asked Dr. Bateman two questions; one was about the over prescription of activity for CFS patients and the second was about her practice - what percentage of CFS patients she sees and are there subgroups that she finds useful in treating patients. She responded that in her most disabled patients she asks them to at least try and do some stretching as the effects of severely restricted activity (such as that shortening of ligaments and a resultant exacerbation of disability, etc.) is not insignificant. As for the impacts of exercise on CFS patients, she was the doctor that sent her CFS patients to Drs. Alan and Kathy Light for their exercise study. I won't claim to know where she stood before those studies but I get the sense that at present, she is amongst the best informed as to the exaggerated negative impact that exercise can have on CFS patients.
Those studies could well have changed her views.
To be honest, I hope so.

I went to lots of physiotherapy and did stretches for a long time for a tight hamstring. Didn't make any difference. My muscles behave oddly after ME/CFS and I know others do too.

I don't think one can extrapolate from what can work for other conditions which is exactly the problem we have with physical therapists and others with regard to exercise.

There is no research evidence for those interventions (stretching, etc) for the severely affected - the reasons for tightness in ME/CFS may be different to other conditions e.g. mitochondrial problems.

The Lights have said things to the effect that exercise is good for patients. Don't know where they picked it up (could have have been LB) but if LB was stronger on exercise I would have hoped she would have challenged them a bit (maybe they have changed their tune in more recent times?)

As I said earlier in the thread, patients have limited energy and can have more pressing uses for their energy. I think exercise should be seen as an optional rather than a core part of any program, which appear to be at variance with what I have seen Dr. Bateman recommend - she seems to see exercise as quite important.

If she wants to say that to the patients who sees her, that's one thing - an education program for everyone's doctor is a bit different.
Without more evidence, I think there should be major caveats in any programs for doctors and others if exercise is being recommended. The research evidence simply isn't there.

Here is an article which gives a feel for the advice she gives:
http://www.cfids.org/sparkcfs/exercise.pdf

Seems plausible to me that such a person would agree to the CAA Medscape CME exercise section which to my mind is not suitable for doctor education.

You are right that diplomacy is important of course.
 

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
Your assumptions are wrong. The CDC puts their own program on their own website - they simply have to keep it running; the CAA, on the other hand, has to pay a substantial amount - from what I've heard - to keep the program on Medscape website. I agree that they should do what they can to keep it current.

I think you assume that you know too much Justin. You may not agree with Kim McCleary's decisions but if you've ever talked with her you can tell she's a very smart woman who doesn't need you to 'babysit' her. She is extremely well-versed in the research side of chronic fatigue syndrome. I would do a lot better with your criticisms if you could couch them in a less demeaning manner.Speaking in such a belittling manner that does two things; one, it can provoke a similar response (probably from me :)) and two, it doesn't give the issues complexity the justice due to them. Some people think I'm a shill for the CAA or blind to their faults - I think I've shown that that's not true - but what I've really protested at are demeaning comments like that.

I forgot to mention in my earlier post responding to this the following which is based on incomplete knowledge, so correct me if wrong: You say my "assumptions are wrong" because CAA has to pay alot to keep the more recent CME document on the Medscape website. The document is on the Medscape site, but CAA has let the CME credit approval lapse, which makes it next to useless.

So, based on the info you provided me, CAA is paying alot to have the document on the Medscape website, to no good end since it let the credit approval lapse. Consequently, doctors are using the even worse CAA/CDC Spark! CME on CDC's website. Again, correct me if wrong.
 

Dolphin

Senior Member
Messages
17,567
I have several responses to what I've been reading on this thread this morning.

First of all, for those who aren't familiar with Jo Nijs Department of Human Physiology, here is an article, dated May 2008, which appeared on Co-Cure.

http://cre.sagepub.com/cgi/content/abstract/22/5/426 I found nothing contradictory in this article; I thought they were right on.
I read that full paper in 2008.

They didn't prove the extra pain was short-term - they stopped measuring after 24 hours.
The fact that he downplays that 14 out of 24 had a clinically meaningful worsening in pain 24 hours later doesn't increase my confidence in him.

They also had a statistically significant worsening in their sore throat.
It is a bit misleading when they say the fatigue levels return to normal at 24 hours.
Before test: 48.9 +/-23.1
Immediately post-exercise: 62.1 +/-24.3
24 hours post-exercise: 58.0 +/-28.8

That's a large increase and with a bigger sample would likely have reached significance.

So it looks to me that a good lot of the patients generally felt pretty rotten after it.

At the time, I was searching for and printing articles on excercise. Why? Because my specialist of 7 years, whose name has been used repeatedly in the last several posts, told me at every visit I needed to exercise, and whose first question seemed to be are you exercising? We would have the same conversation every time. I would say, I'm keeping up a home. I was told that isn't exercise. I knew he was wrong.
Which is exactly the situation I think we should be trying to avoid. Doctors shouldn't be told that exercise is what is required in this illness.

Thankfully Staci Stevens helped find the answers I needed. Unless you've gone through her protocol, please don't judge her. She's on our side.
She is a good researcher and I am pleased she is doing exercise research.
However the pacing leg of the Leonard Jason trial came out better than her program.
This fact seems to be rarely if ever mentioned.

Secondly, during the CAA Spark the Awareness campaign, I was asked to interview with a small-time news magazine. The writer was genuinely sincere, and I want you to know what a thrill it was to speak freely and openly about CFS and the impact on my life. I wanted the audience to know of the devastation. The photographer took two pictures: I was sitting with feet up, holding my dog, and in the second one, I was lying on the bed with my eye mask on. Clearly it was during the day because sunlight come through the window. It was the photographer's idea to juxtapose the two. It's probably still on their website. There was an incredible amount of work for that campaign. They sought out the potential media and needed to match the right person. The CAA is indispensible in my mind.
I too think such awareness campaigns are important and useful.
 

Dr. Yes

Shame on You
Messages
868
Hi Shane and Tom K.,

I want to address the general issue of reliance on clinicians for our understanding of this disease; I am using Dr. Bateman mainly as an example rather than the main focus in most of this post. There is an uncomfortable amount of what is almost deification of medical professionals in many quarters which is not healthy. There are a number of reasons why the CAA should not be adopting the attitude it has in relying for input in the CME, etc upon medical 'experts' with vast 'experience' to the exclusion of the ME/CFS patient base - which has more experience with the disease collectively than any two or three or twenty doctors put together.

I am sure that working in a patient organization broadens one's experience. I'm not sure that it is the same as seeing 20 patients a day and having a case load of hundreds.

As for Dr. Bateman's view of exercise, she'd have to speak for herself but I know that she encourages the most disabled of her patients to try and at least do some stretching to help stave off the worst effects of inactivity.

A doctor has a very different perspective on illness than any patient. No matter how many patients, or how broad a range, Dr. Bateman has seen, it doesn't mean she (or any other CFS specialist) truly understands what her patients have been telling her. A doctor approaches the patient with a set of practical clinical guidelines that inform her/his interpretations. This is meant to maximize the effectiveness of a necessarily brief analysis and therefore of treatment. There have, however, been volumes published that debate the positives and negatives of this protocol of interaction. How much real understanding of a patient and their condition can be garnered in this way, especially if the disease is a mysterious one? How effective can patients be in reporting symptoms in such cases? How much do disease definitions affect a clinician's perceptions of a disease or group of diseases? How can one properly evaluate and - especially - generalize the effectiveness of treatments?

None of the doctors in question here are also patients. Not even moderate-to-high functioning patients. There is only so much a healthy person can understand from speaking to a patient in the unusual context of a doctor's interview and in the unnatural environment of a doctor's office. Dr. Bateman doubtless was familiar with another dimension from having a PWC as a family member. However, that does not necessarily mean she understands the disease fully, no more so than my mother or father (who was also a doctor) did.

Ultimately, there is a disconnect between physician and patient that results in an informational divide. That is where a patient advocacy group assumes great significance and responsibility. To rely on doctors exclusively for treatment advice (let alone all else) is a major mistake - especially in a disease like this one, and especially if you are only talking about a couple of doctors. If you ask Cheney or Byron Hyde, you would get a completely different, often contradictory, recommendation on exercise from the one you'd get from Bateman and Klimas (or Lapp). I don't see how, even if you restrict yourself to physician advice, you should limit that advice to one perspective at the expense of another equally (if not more) valid one.

Doctors are also human beings. Human beings are flawed. If you restrict your inputs for a set of recommendations to a few human beings, you are grossly narrowing your range of interpretation. The more the better. And, as I said, you would still be missing the vast majority of experience - patients. Doctors' experiences are not equal to or greater than the sum total of those of the patients they have seen. Very often they are unaware of or neglect, in favor of their own biases or constructs, issues of MAJOR importance to a majority of patients. The recommendations of clinicians MUST be complemented by the recommendations of patients, especially in the literature and physician training materials of a patient advocacy group.

I am shocked that any patient would argue otherwise if s/he has really experienced (1) what this disease can do, (2) the limitations of our best clinicians, and (3) the grotesque limitations of most other clinicians and our medical establishments as a whole. [Shane- I don't think this comment applies to you]

As for the issue of activity/exercise specific to Dr. Bateman... I have read her essay on the "Exercise Conundrum" and other statements she has provided. Not bad for moderate to high functioning PWC who are not at risk of sudden relapse. But that's just the thing - her approach doesn't adequately address that reality. I am referring to the abrupt and long-term collapse that even seemingly 'small' amounts of exercise (usually graded) can trigger, unpredictably, in PWC. It happens often enough that it cannot be regarded as anomalous - on the contrary, it must be factored in as a significant risk. That calls for closer physiological and biochemical monitoring of patients during any proposed exercise regime.

Very few clinicians get to see the severely ill (e.g. bedridden or almost bedridden) patients for the simple reason that such patients cannot safely make a trip to see a doctor (especially one who may be in another state). Yet they often are under the false impression that they have. If Dr. Bateman actually encourages the 'most disabled' of her patients to try and at least do some 'stretching', she is not seeing the most disabled patients, who often cannot do even simple stretching exercises. Unless she is aware of this fact, she is not qualified to generalize about the needs and treatment of severely ill patients. To hear from a clinician who appears to be, turn to Dr. Hyde, Dr. Cheney, or (perhaps) Dr. Peterson.

How can patient experience be accurately tapped? For starters, as Tom K. mentioned, there's always the more local or grassroots patient support and/or advocacy groups that distill information and experiences reasonably well, and more importantly can contact their bases and organize information that is broadly agreed upon by the majority of patients involved. The CAA is in a good position to do the same... and should do it. But they need people like many on this forum as a think-tank. I do not think there will be any shortage of volunteers for an equal collaboration.
 

CBS

Senior Member
Messages
1,522
Here is an article which gives a feel for the advice she gives:
http://www.cfids.org/sparkcfs/exercise.pdf

Seems plausible to me that such a person would agree to the CAA Medscape CME exercise section which to my mind is not suitable for doctor education.

You are right that diplomacy is important of course.

My interactions with Dr. Bateman and her responses in the materials you have linked to do not give me any reason for concern when it comes to the patients she sees in her practice. The real danger with educational materials for doctors is in how they may be interpreted. I don't think that it would be unreasonable to interpret everything she says in the Spark document as being consistent with what has been described elsewhere as "patient guided activity."

To me, it is a matter of assumptions being made by uninformed doctors that come to these materials with preconceptions and biases. I think this is a large part of what we are asking for the CAA and other advocacy groups. That terms such as exercise are eliminated and replaced with "pacing" and that a strong emphasis be placed upon the patient being in control of what they can tolerate "without a need to reduce activity the following day."

What parting advice can you give other medical professionals about prescribing exercise for patients with CFS?
Bateman: Listen to the patient. Experiment. Readjust as needed. Be creative about better-tolerated forms of exercise for that particular patient. Individualize the advice.

What do you see as the greatest exercise-related risk for people with CFS?
Bateman: The greatest risk is a patient getting discouraged and falling away from all forms of
exercise. I also think some patients can develop more chronic pain or other symptoms from forcing
exercise when they shouldnt. I encourage patients to listen to their bodies, avoid pushing too hard when it might cause the most problems but come back to what they can tolerate when feeling better.

What concern or resistance have you experienced from CFS patients when it comes to exercise? How do you address these concerns?
Bateman: Resistance comes from negative experiences with exercise itself and with physicians
who dont seem to understand what the person is going through.
My patients and I spend time every visit talking about their pain, fatigue, sleep, mood, function and payback symptomsaddressing exercise in the context of that communication. I think everyone understands that their bodies become weaker without exercise, so its easy for them to imagine how that might compound their CFS. I encourage patients to start low and go slow, reminding them that they have all the time in the world to become stronger but can crash very quickly. I counsel them to do the amount of stretching, strengthening and light activity that will not cause any rebound symptoms the following day. We also discuss ways to do exercise lying down, seated or in water to avoid orthostatic intolerance.

Replace the word exercise with the word activity and I have no problems with any of the above. Exercise connotes a program of activity beyond the activities of daily living. We all know that for many CFS patients, the activities of daily living and self-care can bee too much. I see an appreciation of that in her comments but it I agree that it is critical to say what we mean when giving advice.
 

Dolphin

Senior Member
Messages
17,567
Replace the word exercise with the word activity and I have no problems with any of the above. Exercise connotes a program of activity beyond the activities of daily living. We all know that for many CFS patients, the activities of daily living and self-care can bee too much. I see an appreciation of that in her comments but it I agree that it is critical to say what we mean when giving advice.
Yes.

But I think even higher functioning patients should be free to not have to do an exercise program - maybe that is covered in what you say, it's a little unclear.

I'm just going to repeat a point I made earlier. My main point at this time isn't the first paragraph.
I'm not sure if most doctors truly understand the illness even if they are sympathetic. The people who understand the management aspects of the illness best I find are people who have the illness (which can include some doctors and other professionals) and then people who live with. Nearly everyone else seems to say problematic things at least the odd time.

I don't think everyone should be encouraged to do exercise programs. Professionals could say that if patients want to do an exercise program, this is how they could do it but that's different from recommending them for everyone.

3 Dutch studies and Fred Friedberg have now found that when people have been encouraged to go for walks, they don’t do extra steps across the day.
This means that if they are going for walks, they are cutting out other activities.

A lot of people really aren’t in a position to be cutting out activities. They might have pressure to do some sort of paid work.
Or they might have children to mind – going for a walk may mean they have less time to mind their children.
Or going for a walk might mean they have less time to put into their relationship with their partner. Or energy they might spend socialising (which might lead to finding a partner).
Or they might have other responsibilities like relatives or minding their house, cooking, shopping, etc.

So I don’t think there should be too much pressure on people to do “meaningless” walks or other activity. They should try to do a reasonable amount of activity (and could keep track of this using a pedometer) but that shouldn’t mean they should be expected to use up a good percentage of their energy going for walks or other exercise.

If they want to want to exercise, as I say, they could exercise but I don’t think it should be part of a management program that everyone should be expected to do.

It is not necessarily easy to get clinicans to not recommend exercise programs if that's what they tend to do with their patients.
 

CBS

Senior Member
Messages
1,522
<snip>As I said earlier, I feel strongly that patients bring a depth of experience that informs this conversation. In the past, we haven't been involved in this conversation to the degree that we are presently. A lot of people have stepped up and at the same time Cort created a very powerful tool. My hope is that as advocacy groups and leading CFS docs are approached, we make sure to do so in a manner that conveys real urgency while also indicating a desire to understand (they know we're angry, they might be a bit surprised and relieved if on more occasions we asked how something came to be in a way that doesn't come off as a condemnation).

Thanks for your thoughtful and insightful comments Dr. Yes.

Thanks Dr. Yes,

Agreed. I don't think Tom and I are far apart on this. The whole range of patients must be involved in any advocacy organization. To be frank (and to repeat an earlier statement), I think that some of the most severe patients generate a great deal of anxiety in doctors and in the less dramatically disabled about how severe this disease may be in its more advanced stages.
 

CBS

Senior Member
Messages
1,522
Yes.

But I think even higher functioning patients should be free to not have to do an exercise program.

I'm just going to repeat a point I made earlier.

It is not necessarily easy to get clinicians to not recommend exercise programs if that's what they tend to do with their patients.

I agree that the word exercise and all that it infers needs to be dropped from any advice.

I'm also well aware that there are days when the activities of daily living are sometimes too much, even for higher functioning patients. The potential to exacerbate permanent damage by overdoing it is simply not worth it. Did I mention that I haven't shaved or showered today (months ago that it might have been a week or longer - I simply couldn't manage it without a significant exacerbation of symptoms)?
 

starryeyes

Senior Member
Messages
1,558
Location
Bay Area, California
From Justin

Here's there's another eye-opening fact for you Justin. The Board of the Fair Name Change Campaign for CFS (Dr. Klimas, Dr. Cheney, Dr. Bateman, Dr. Komaroff, Dr. Jason, Rich Carson, etc) unanimously voted not to have myalgic encephalomyelitis as the name for CFS in 2008 I think it was.

..

Cort, they voted to have the name changed to ME/CFS:

http://www.prohealth.com//library/showArticle.cfm?libid=12597

The Medscape CME course is one of the courses for doctors we've been discussing that we are unhappy with. It's chock full of CBT and GET. Back on page 88 or so, I posted all of this directly from this CME.

Cort wrote the CAA should: Remove Sparks completely as soon as they can - replace with the CME.

See above.

I think some people here just don't want to acknowledge these problems with all of the CME materials put out by the CAA. For some odd reason.

These materials are harmful to CFS patients.
 

Advocate

Senior Member
Messages
529
Location
U.S.A.
To be frank (and to repeat an earlier statement), I think that some of the most severe patients generate a great deal of anxiety in doctors and in the less dramatically disabled about how severe this disease may be in its more advanced stages.

That's not what I see. I think the less dramatically disabled people believe, "That won't happen to me, because I..."
 

Dr. Yes

Shame on You
Messages
868
Hi Shane,

You said you had no problem with the following passage as long as the word "exercise" was switched with "activity". But I see a major problem with this response (I put part in bold):

What do you see as the greatest exercise-related risk for people with CFS?
Bateman: The greatest risk is a patient getting discouraged and falling away from all forms of exercise.
I also think some patients can develop more chronic pain or other symptoms from forcing exercise when they shouldnt. I encourage patients to listen to their bodies, avoid pushing too hard when it might cause the most problems but come back to what they can tolerate when feeling better.

She thinks that's the greatest exercise (or let's say activity) related risk for people with CFS? Unless that's been somehow taken out of context, she is badly mistaken, as you know from your own frightening experience! The greatest risk is dysfunction or damage - temporary or permanent - that results in long term disablement (or worse).

I bring this up because I was surprised you did not see how misleading that statement is to other physicians (or to patients), when there should be a warning label in its place... and I also bring it up because this is a perfect example of what is wrong with CAA literature on exercise/activity, etc... It is out of touch with reality - often dangerously so.

-------------------------

On an unrelated note, at my worst I had to go months without bathing (even with full assistance), and I have spoken to or read about many severely ill PWC who have had the same experience. (Thankfully that's not the situation now, as I have improved since then, but I am well aware of the fragility of my condition.) I bring this up not to compete with anyone (what an honor to THAT title), but to point out the following:
There is a level and PREVALENCE of severity of this illness that many of our most well-known doctors and the CAA seem totally unaware of.
 

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
... Doctors...[v]ery often they are unaware of or neglect, in favor of their own biases or constructs, issues of MAJOR importance to a majority of patients. The recommendations of clinicians MUST be complemented by the recommendations of patients, especially in the literature and physician training materials of a patient advocacy group.

I am shocked that any patient would argue otherwise if s/he has really experienced (1) what this disease can do, (2) the limitations of our best clinicians, and (3) the grotesque limitations of most other clinicians and our medical establishments as a whole...

How can patient experience be accurately tapped? For starters, as Tom K. mentioned, there's always the more local or grassroots patient support and/or advocacy groups that distill information and experiences reasonably well, and more importantly can contact their bases and organize information that is broadly agreed upon by the majority of patients involved. The CAA is in a good position to do the same... and should do it. But they need people like many on this forum as a think-tank. I do not think there will be any shortage of volunteers for an equal collaboration.
[emphasis added]

Thank you, TomK, Dr. Yes and CBS for your excellent (as always) posts. I must especially thank Tom for his through review, consideration and explanation of the research as it relates to these important topics. Extremely useful and enlightening.
 

Hope123

Senior Member
Messages
1,266
What I suggest re: physician/ medical staff interpretation of the experiences of ME/CFS sufferers vs. direct reporting from ME/CFS sufferers is that the surveys that tomk puts in his signatures re: adverse reactions with GET be brought up to the CAA, the IACFS, people's own physicians, etc.

There is a lot of interest in how people feel with a particular treatment or intervention among some physicians and researchers. Aside from hearing directly how people feel on a one-to-one basis, having large surveys of patient experiences will also help convince physicians and researchers. In fact, it wasn't until I had perused the UK survey several months ago that I was aware that 30-50% of folks suffered adverse reactions from GET. I had heard enough from individual stories to be aware of it but the surveys reinforced this information. I think this information is barely known among US MDs/researchers since it was not conducted in the US and the CAA did not emphasize their past 1999 survey results showing 28% adverse rate.

My physician isn't aware of these stats but from his patient experiences warns everyone to be careful of overactivity lest it damage them long-term. I will bring it up to him next visit.