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

CBS

Senior Member
Messages
1,522
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):



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.

Dr. Yes, you're right. I do agree that the potential for permanent damage and even death is by far the most serious risk of exercise or inappropriate activity.


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.

I know that my own experience has included a sudden dramatic decline that I simply never imagined possible. It was clearly life threatening and it came after a period of ignoring physical signs that I was overdoing it. Still, I know that things could have been far worse. I don't know that I can imagine what far worse would actually feel like but I know my experience has been far from the worse possible case.
 

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
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.

Query: By 'anxiety' do you mean appropriate concern, inappropriate anxiety or something else?

I see it as appropriate concern on the part of patients, but I think doctors generally should be more concerned about this than they are.
 

Dolphin

Senior Member
Messages
17,567
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.
Thanks for the plug - I'm on commission. :Retro wink:

I've just asked the webmaster to change a typo:
CBT had a lower rate of adverse reactions compared to the rates seen in other surveys. This may be because CBT in the US currently simply based on GET there are different forms offered some which might encourage the pacing of activities. However this might change if information from the form of CBT that tends to be used in the UK and the Netherlands is highlighted by the CDC.

to

CBT had a lower rate of adverse reactions compared to the rates seen in other surveys. This may be because CBT in the US currently is not simply based on GET there are different forms offered some which might encourage the pacing of activities. However this might change if information from the form of CBT that tends to be used in the UK and the Netherlands is highlighted by the CDC.
 

Dolphin

Senior Member
Messages
17,567
[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.
Thanks for putting me in such esteemed company.

As I have said earlier in ths thread, there have been lots of very good points made in this thread including by yourself - I put aside posts to praise but eventually gave up as there were so many.
I'm glad the time I put into reading research papers is of some value. I don't always understand every bit of them in terms of the science but tend to understand the stats while my guess is many others skip over them.
 
G

Gerwyn

Guest
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.

Cort a phobia is an irrational fear.In this case the fear is completely rational and based on experience.The misdiagnosis is derogatory and shows an appreciable lack of understanding and empathy
 

Mithriel

Senior Member
Messages
690
Location
Scotland
Dr Yes, I agree with you completely.

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.

When I read this I was horrified. In a lot of ways the 108 pages of this thread can be summed up in the different reactions to that quote. I don't feel this particular doctor is against us but a patient organisation should have seen it, saw the danger and corrected her. That is what an organisation of patients is FOR; to help doctors of goodwill who have missed an important point.

To claim that patients are human and so some will have this problem is disingenuous. Some people who are diagnosed with diabetes may cut out so much food they will become anorexic but advise on how to treat that is not given priority in the list of things for doctors to do. If it must be mentioned, as has been said before many times, it should be with lots of warnings surrounding it of the dangers of mistaking an appropriate avoidance of something dangerous as an irrational act.

Forums, particularly this one, are giving the severely disabled a voice they have been denied - local groups for instance are made up of the ones who can physically get there - so it should come as no surprise that there are long threads like this which have disagreements. Our outlook on how this disease affects people is bound to be more extreme and more wary. Someone who is in a wheelchair because of an accident at a street crossing is going to be more vocal about the dangers it presents than officials who look at it on a map.

I am especially against all these things which advocate exercise without strong warinings because I have not walked more than a few steps since I over did walking in 1990. We are not arguing from a philosophical viewpoint, we are living with the consequences. I do not want anyone else to endure my life. I put a brave face on it, I look on the bright side, I am grateful I am not worse, but I never pushed my grandson's pram, never took him to the park, have never doen so much.

I CANNOT sit here and let a PATIENT organisation recommend the very thing that did this to me.

Mithriel
 
G

Gerwyn

Guest
the cme says me is a different disease because it has neurological and muscular signs and cfids is an inappropriate name because immune dysfunction has not been shown to be a part of 'cfs

the caa is supporting the view that cfs patients have no reported abnormalities of the immune system and dont report neurological symptoms. What are we left with chronoc fatigue?

The simplest no cost solution to avoiding the clutches of the dsm v is to change the name and adopt the ccd definition as it is the only clinical definition.sufferers are patients and not trial subjects so they need a clinical definition that no psychiatrists can deny
 
G

Gerwyn

Guest
Query: By 'anxiety' do you mean appropriate concern, inappropriate anxiety or something else?

I see it as appropriate concern on the part of patients, but I think doctors generally should be more concerned about this than they are
I pushed myself physically and mentally.As a consequence I had virtually no cognitive function for 4 years alexia agraphia dyscalcula agnosia seisures loss of cognitive map propioreception you name it.I aslo could not even push a vacuum cleaner.

The "Fatigue" element was the least of my worries.Calling this illness chronic Fatigue syndrome in the first place was innapropiate and politicall;y motivated.Accepting and perpetuating that label is innapropiate and politically niave and an act of gratuitous self harm.perhaps bateman et all would describe that as a phobia of some kind!

In short changing the name to properly reflect the range of biomedical abnormalities observed in clinical trials appears to be a no brainer
 

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
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 shouldn’t. 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.

Dr Yes, I agree with you completely.

When I read this I was horrified. In a lot of ways the 108 pages of this thread can be summed up in the different reactions to that quote. I don't feel this particular doctor is against us but a patient organisation should have seen it, saw the danger and corrected her. That is what an organisation of patients is FOR; to help doctors of goodwill who have missed an important point.

To claim that patients are human and so some will have this problem is disingenuous. Some people who are diagnosed with diabetes may cut out so much food they will become anorexic but advise on how to treat that is not given priority in the list of things for doctors to do. If it must be mentioned, as has been said before many times, it should be with lots of warnings surrounding it of the dangers of mistaking an appropriate avoidance of something dangerous as an irrational act...

I am especially against all these things which advocate exercise without strong warinings because I have not walked more than a few steps since I over did walking in 1990. We are not arguing from a philosophical viewpoint, we are living with the consequences. I do not want anyone else to endure my life. I put a brave face on it, I look on the bright side, I am grateful I am not worse, but I never pushed my grandson's pram, never took him to the park, have never doen so much.

I CANNOT sit here and let a PATIENT organisation recommend the very thing that did this to me.


Mithriel
[emphasis added]

This is very powerful. Thank you, Mithriel.
 

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
the cme says me is a different disease because it has neurological and muscular signs and cfids is an inappropriate name because immune dysfunction has not been shown to be a part of 'cfs'

The "Fatigue" element was the least of my worries.Calling this illness chronic Fatigue syndrome in the first place was innapropiate and politicall;y motivated.Accepting and perpetuating that label is innapropiate and politically niave and an act of gratuitous self harm.perhaps bateman et all would describe that as a phobia of some kind!

In short changing the name to properly reflect the range of biomedical abnormalities observed in clinical trials appears to be a no brainer

Nice summation.
 

Dolphin

Senior Member
Messages
17,567
CME on severely affected

They do finally address the severely ill:
Severely Ill Patients

A subset of people with CFS are so severely ill that they are largely housebound or bedbound. They require special attention, including a modified approach to exercise. Hand stretches and picking up and grasping objects may be all that can be managed at first. Gradually increasing activity to the point that patients can handle essential activities of daily living -- getting up, personal hygiene, and dressing -- is the next step.

Focusing on improving flexibility and minimizing the impact of deconditioning so patients can increase function enough to manage basic activities is the goal with severely ill patients.
This is baloney. It is giving the impression that the severely affected will be able to do more with a graded exercise/activity program. There's no evidence for this - they are most likely doing all they can.
 

oerganix

Senior Member
Messages
611
This is baloney. It is giving the impression that the severely affected will be able to do more with a graded exercise/activity program. There's no evidence for this - they are most likely doing all they can.


Evidence...schmevidence! Who needs evidence!

You're right, they are most likely doing all they can, and so are the rest of us. The whole exercise/activity debate is full of holes, a diversion from actual treatments for real symptoms. It's inherited from the psychobabblers who claim that being "deconditioned" is the source of all our problems, a "theory" that has been totally disproven, but still has legs and listeners, in the form of those who WANT to believe it despite the evidence.
 

CBS

Senior Member
Messages
1,522
Query: By 'anxiety' do you mean appropriate concern, inappropriate anxiety or something else?

I see it as appropriate concern on the part of patients, but I think doctors generally should be more concerned about this than they are.

Justin,

What I meant by "anxiety" is that it is my own experience that when I was less seriously disabled I really didn't want to think that I was already well along the road that was going to lead to a state that was similar to the many horror stories I had read about the most seriously ill (so far, worse than some, less severe than others - regardless, frighteningly worse that I ever imagined).

I said earlier that even after what I have been through, I'm not sure that I can really know what it is like for those amongst us that have been strictly bed bound for years (or in nursing facilities). After what I have experienced, the thought that there is something worse is frightening and yet now I have no illusions about how quickly this can turn from manageable to spiraling out of control. In my book, nothing irrational about that, I, like many here, have lived it.

I think that same thought scares the hell out of many of our doctors (as does the thought that there may be some retrovirus that's been at the root of this thing all along and all of the accompanying implications). Uncertainty and the feeling that something more sinister is at work is far more threatening (to health and sense of control) than inappropriate illness beliefs. But as Dr. Klimas said, here's a group of patients that has been so badly neglected and mistreated that we actually view the possibility of a retrovirus as good news.

Here's an analogy I sometimes use. Think of the medical establishment as a patient in counseling. I've done a fair amount of counseling and in the beginning, clients almost always quickly gravitate to the least threatening yet still plausible explanation for a problem. Great, lets try the easiest/less threatening stuff first. The problem is, that's almost never it. In some cases counseling becomes a process of walking with the client as they iteratively try out a series of "the next least threatening explanations on their list of plausible truths." Fear goes up, in the best cases trust goes up and so does excitement because a client senses that they are finally making meaningful progress.

As the CFS population ages and more of us move into the more sever stages of this disease and as research progresses, it is getting harder for the medical establishment to see old views as plausible. Like in counseling, we're moving to the next stage and the patient (in this case, the medical establishment) is scared because the problem is far from what they wanted to believe and old theories are dying quickly (the least threatening yet still plausible explanation - "its the patients fault" or even "exercise can't harm you") and those truly on our side are excited because this is starting to feel a lot more genuine and fact based.
 

Orla

Senior Member
Messages
708
Location
Ireland
CBS wrote:

As the CFS population ages and more of us move into the more sever stages of this disease and as research progresses, it is getting harder for the medical establishment to see old views as plausible

I have to diagree with you here. That might be your personal experience of your personal doctors (who were already sympathetic, or knowledgable to some extent if you are thinking of Montoya) but the medical establishment on the whole still cling to their false illness beliefs, and still have no idea what many patients go through on an average day.

Edit: Even the sympathetic ones can be somewhat clueless, as is evidenced by some of the false, misleading, and frankly ridiculous statements on exercise.
Orla
 

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
I pushed myself physically and mentally.As a consequence I had virtually no cognitive function for 4 years alexia agraphia dyscalcula agnosia seisures loss of cognitive map propioreception you name it.I aslo could not even push a vacuum cleaner.

dystypea? :tongue:
 

CBS

Senior Member
Messages
1,522
I have to diagree with you here. That might be your personal experience of your personal doctors (who were already sympathetic, or knowledgable to some extent if you are thinking of Montoya) but the medical establishment on the whole still cling to their false illness beliefs, and still have no idea what many patients go through on an average day.

Edit: Even the sympathetic ones can be somewhat clueless, as is evidenced by some of the false, misleading, and frankly ridiculous statements on exercise.
Orla

Or maybe I've just gotten better at recognizing doctors who can't help (they have lots of way of trying to tell you this without coming right ourt and saying so) and I no longer hesitate to fire them. That said, I may also have kept doctors who were skeptical but hadn't closed their minds on the subject. These docs are better than most. Two years ago my endo, GI and cardiologist would have all told you they didn't see CFS patients (that they didn't see what was right in front of them was not something I wanted to waste time arguing over). Now, to a person, they all think that I'm one of their more exciting patients as, with the help of Dr. Montoya, they are now finding ways to help patients that they previously had nothing to offer. Nothing makes most docs more uncomfortable than "not knowing" and being impotent to fix a problem.
 

Lily

*Believe*
Messages
677
I have to diagree with you here. That might be your personal experience of your personal doctors (who were already sympathetic, or knowledgable to some extent if you are thinking of Montoya) but the medical establishment on the whole still cling to their false illness beliefs, and still have no idea what many patients go through on an average day.

Edit: Even the sympathetic ones can be somewhat clueless, as is evidenced by some of the false, misleading, and frankly ridiculous statements on exercise.
Orla

I very much have to agree with Orla. There are frighteningly few physicians, who realize what this illness can do. Most of us who are extremely ill are not medical emergencies and when we become so, it will not be attributed to CFS. You have been in a rather unique position, Shane, to have had the type of complications you've had and to have had competent medical personel.
 

CBS

Senior Member
Messages
1,522
I very much have to agree with Orla. There are frighteningly few physicians, who realize what this illness can do. Most of us who are extremely ill are not medical emergencies and when we become so, it will not be attributed to CFS. You have been in a rather unique position, Shane, to have had the type of complications you've had and to have had competent medical personel.

I haven't always been so fortunate and it wasn't always appreciated that my complications were because of CFS but I do recognize that I am one of a very few CFS patients that really has a great set of doctors (I fired everyone that didn't fit that description - I know that's a luxury few enjoy). I did not start with all of my docs as a "CFS" patient. I am now an ME/CFIDS patient to them all. I'm trying hard to get the good docs that I see to recognize ME/CFS in their other patients and to share the word with their colleagues. I'm also lucky in that I have had some success in minimizing symptoms and crashes with a combination of treatments. My docs are all watching, learning, and I've been told, trying new approaches with their other CFS patients.
 

Cort

Phoenix Rising Founder
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.

I agree that the Medscape CME course is doing no good if its not activated - which means that the CDC toolkit is now the only place to go to get CME credits for CFS - not a good situation. The inability of the CAA to re-activate the CME course is puzzling to me given that it did appear to be quite successful. I hope they re-activate it.