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

[justinreilly]

The CAA has never been able to grasp that the social conditions most of us endure involve a very high degree of alienation and marginality. Instead, despite its protests to the contrary it has consistently served up steaming portions, in the memorable phrase of a cfs activist,of happy clappy feel good yaya, delivering false hope when what was needed was compassionate grounding in the truth. My first cfs doctor, on my initial visit, gently but firmly told me that I was not going to get better for the foreseeable future and that I should apply for social security. I was sad,of course, but this was the first time a circuit of true understanding had been closed by someone trustworthy, since I had gotten sick. It was a huge relief.

By contrast, the CAA has seldom played that role for me, of validating important, genuine perceptions, and resolutely opposing all that would denigrate or hurt this extremely vulnerable community. It allowed the devil through the door, when it made the decision to give the psychological crudity of Peter White et al a place at the table. Conceding anything to the Stephen Strauss's or the Bill Reeves has been catastrophic. Instead of a robust opposition, they were useful idiots, providing the cover these cunning and arrogant men and institutions needed for their ongoing campaigns of denigration and lip service.

Which gets me to the current focus of the debate. How could a term like kinesophobia make it into a document purporting to represent the needs of patients, if the CAA itself hadn't desired to speak in the language of the "big boys", the voice of authority. This was not meant to be seen by patients but to be applied to patients. They assumed passivity on our part, and since any phobia Is cognate with delusion, self deception.

Authority and "expert" knowledge is a vexed subject with people with this illness.
That has been the game: who has cognitive authority and whose cognitive authority counts the most. I've just marked the kickoff to my 23rd year with m.e. And while I appreciate the efforts of our doctors on our behalf I also believe that they are not doing us any favors. They are acting decently, courageously, ethically. That should be celebrated but does not require obsequious submission or fawning gratitude. We DESERVE the best medical care.

Appealing to authority to justify giving exercise advice, which engenders no benefits but endangers what fragile limb we happen to be perched on, is unacceptable. In addition to being dangerous, it recapitulates the ur trauma haunting m.e., the relentless skepticism and disbelief many of us endure everyday and the ideology of false illness beliefs and exercise avoidance that is its close companion. When so little is known about energy metabolism and its catastrophic dysfunction in us, the appeal to authority is ludicrous. It's both prudent and wise to keep a close eye on any organization whose blind spot is its relation to its own craving for authority and dominance, whose displays of leadership have been extremely unconvincing, and whose will to power, by accommodating the worst forces at play in m.e./cfs history, has stranded us in limbo. Eat your Wheaties and support the WPI.

I like. Looking forward to more insightful postings, akrasia!

 

[justinreilly]

Jennie,

Thanks for your inquiries on our behalf. It is very nice to see that some concrete changes are being made!

I would have liked to have known earlier that CAA doesn't plan to do anything to update or renew the "CAA CME" as you had previously implied or indicated that CAA was waiting for XMRV replication studies to be published. Please correct me if my statements here are not accurate.

I would also have liked to have known earlier that Medscape owns the IP rights to the CME and does not have plans to update or renew it. Again, please correct me if inaccurate.


Teej,

You posted (sorry I can't find the post now) your objection to Kim McCleary's request to remove her name from the CDC CME. I requested that CAA remove its name and those of its employees from this CME so that there was no more imprimateur from a patient org on this doc. So, I applaud her request.

 

[justinreilly]

Quote Originally Posted by justinreilly

Cort,

I realize that writing removes the context of body language and vocal tone and I didn't put a smiley face after my comment, but my comment was obviously intended to be sarcastic and so was Brenda's. Noone, except you apparently, would ever think or believe that I was seriously saying that the actual meaning of Phoenix Rising is 'rising from the ashes of deconditioning.'

My apologies then Justin - no harm intended - no offense taken.

I appreciate your apology. Obviously, I overstated the case in my post as a couple of people have pointed out.

 

[jspotila]

I would have liked to know earlier that CAA doesn't plan to do anything to update or renew the "CAA CME" as you had previously implied or indicated that CAA was waiting for XMRV replication studies to be published. Please correct me if my statements here are not accurate.

I would also have liked to have known earlier that Medscape owns the IP rights to the CME and does not have plans to update or renew it. Again, please correct me if inaccurate.

No, when the credits expired in October 2009, Medscape and the Association agreed to wait for more XMRV studies before making changes. At present, the Association has no plans to use the CME, and the question of future changes is unresolved. The course belongs to Medscape, so we can't just go in and change it at will. Changes have to be approved and managed by Medscape. I have no information about what Medscape's own plans are for the course at this time.

 

[Robyn]

xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

 

[jackie]

wow! robyn...and wow again!

I'm sorry I can't eloquently express my admiration for you and your fighting spirit...but I used up all my "share" of good words (and what was left of my energy) trying to get my point across today!

Thank goodness we have somebody like you on our side!~jackie (welcome to the fray!:Retro wink

 

[Roy S]

off topic labels PLEASE

Folks, could I ask that people at least label posts off topic when appropriate?

 

[Roy S]

Cort, seriously; do you expect anybody to believe this?

Please don't think I'm overly sensitive to this issue but I don't respond strongly to ANY critique of the CAA.

 

[starryeyes]

this is the weirdest coincidence i just have to add it it (at the risk of being ot, once again!) but it's such a classic example of illustrating some of what "we" have been talking about!

I opened my mail a little while ago to find a letter from my Ins Co (an HMO), and an enclosed pamphlet directing me to a websit to have a little chat with ("robo")emmi!

The letter stated that my ins. had been recently informed that I have a "back problem" (with low back pain) and they want to help me "Recover"! It seems that the very sweet pc Doc that I began seeing a few months ago (who also seems very sympathetic and willing to learn all i'm able to tell him about me/cfs - and have already told him oodles!) sent info to my insurance re: my back (he asked casually if my back hurt and I said (innocently enough!) "Sure...ever since I flew off the back of a motorcycle 40 years ago going 45 mph landing on my left side and sliding 1/2 a mile down an asphalt road! so yes! I do have back pain.... in addition to me/cfs.!" (AND he knows that I have severe PEM, in response to exercise/activity.)

But that was all it took to start the ball rolling (in case you don't know...your Insurance Co. WANTS you to "RECOVER" at any cost!...and stay out of their faces and out of their docs waiting rooms...and not be burning up $$$'s!)

Anyway...the pamphlet directed me to a 20 min online "informational document"...which I decided to calmly view.

When it was done I requested a printout so that I could get my facts straight...but the numbered points at the end were, in addition to CBT AND EXERCISE (the dreaded CBT part was an entire section all it's own...and I very nearly screamed when I saw it come up on MY computer screen - in MY house!) the following.

it says: #1.EXERCISE 2. lose any extra weight, 3. consider a new mattress, 4.get regular sleep, 5.stay active and EXERCISE, 6. walk regularly (and some very GOOD advice concerning Physical Therapy and even some sort of scary surgery info..which I would have appreciated oh, 40 years ago before I got sick!)

All good advice for the "regular" back problem patient! "But what about ME, "RoboEmmi" I cried?"...no response, as usual.

Now what. The letter said that "I will be discussing this info with my doc at my next appointment"...I'll tell him sorry, no - He'll say but your insurance wants you to follow these recommendations! and it's anybody's guess who will win THAT battle.

Will I be considered non-compliant? I've been down that road before...allowing myself to be subjected to Radio Frequency Ablation or RF Thermocoagulation (if you get easily queasy, don't look it up!) in the facet joints of my spine - having my nerves cauterized, being filled with steroids and a combination of chemicals that may have caused "Arachnoiditis" and which my I.D. Doc said may have been one of the the disasters that irreversibly EXACERBATED my me/cfs! (Just so my disability wouldn't be denied due to non-compliance of recommendations!)

I am once again powerless...hoping for "mercy" and understanding from a doctor that is trying to do his job AND his best for me - as he KNOWS it AND as he is DIRECTED TO DO! (probably with help from the offending cme education materials..for all I know!)

One more irritating trial to get through...hoping that this time I come out on top! ironically, j

Beautiful Avatar, Wayne! Soaring up and away!
(My daughter always tells me that she wishes she could be the "wings" at my back - lifting me "up and away" from my "life"!...just hope she doesn't really mean she wants to get rid of me, though!?)

((((((jackie))))))

I can't believe this is happening to you of all people. What you are describing here with RoboEMMI is so Orwellian, it's horrible. I fear that this could become commonplace. I don't think I'd let them put me through their harmful "programme".

I just can't believe this is happening in CA. You know what they say, as CA goes, so goes the rest of the country. So far most of the horror stories I've heard about involving doctors for us in the states have been in CA and did you know that the medical students at the University of San Francisco are being indoctrinated in CBT and GET for PWC by the CDC's new programme under Reeves and that they're planning to use it for many other ailments and illnesses as well?

This is probably coming down from Reeve's new position in the CDC. Does this mean that in the future the uninsured will be the people who can't comply with the programmes they're put into?

I wonder.. and meanwhile jackie, I'm hanging onto your every word. I do feel that this is on topic here but if you decide to discuss it somewhere else on the forum please let us know where.

Hugs to you jackie. Hang in there. Gee, I sure wish we had an advocacy group that could help you.

 

[MEKoan]

This is probably coming down from Reeve's new position in the CDC. Does this mean that in the future the uninsured will be the people who can't comply with the programmes they're put into?

(edit)

Hugs to you jackie. Hang in there. Gee, I sure wish we had an advocacy group that could help you.

I don't know what to say. So, I'll just echo Teejkay.

 

[jackie]

OFF TOPIC (MAYBE?) MY RESPONSE TO PREVIOUS COMMENTS
(my gosh! never done this before, accidentally started out with a "7" size font! yikes! but I like this way of warning of a "hi-jack" attempt! I don't feel so guilty)

Hey guys..."Orwellian" indeed! "Robo-Emmi's" voice was creepily conspiratorial! - everything in a soft "just between you and me" voice (MY paranoid take, anyway!) and after each training segment she'd ask "do you want me to make any notes for you to take to your appt?"...my response - silence, and she'd say "Hmmmm...NOTHING right now? ok! (brightly), lets move on!" SO weird -I think Emmi had ESP, and knew I was begining to get suspicious of what lay ahead. (seeing the words "Cognitive Behavioural Therapy" and the nearly whispered "assurances" of all the advantages of "it", truly shocked me...here I am debating about the fallacy, the dangers and the harm it has done to many, and until now, had only READ of OTHER'S experiences with this!

BUT...I think that was "done" to me (although I was never given any data with "CBT" written on it) at the start of my illness years ago (around 1998, I think) when once again, my ins. co and pcp at that time, referred me to a Psychologist for help dealing with any "anger and depression" I might have concerning my new dx. Even though I protested that I really didn't FEEL any anger OR depression...just a lot of confusion as to how I was being treated (or NOT treated to be exact!)

I was given certain audio tapes to listen to often - reinforcing what my "correct and more helpful attitude" to my situation should be. I didn't play them at home - ever...but during a part of each therapy session we DID play the tapes (funny...my therapist always gave me a stuffed bear to hold on to (presumably in case I wanted to cry or scream or hit something...not sure). And during our tape playing sessions I pinched him (the bear, not the therapist) quite hard and quite a lot. HE never uttered a sound. (Maybe he'd already had a lot of CBT) I was pinching in FRUSTRATION - NOT anger!

Anyway...apparently "they've" got my number now - so my husband and I are going to show the doc some of these posts, AND the studies contraindicating exercise due to PEM, and maybe with some back-up from my id doc (must ask) just say NO...and see what happens. I'm hoping this won't be viewed as "non-compliance" because frankly, I don't think I COULD comply (the GET part)...if my very life depended on it! (I'm coming to YOU, typing in bed, while laying down...and that is the norm for me!) The CBT nonsense will be recieved by a simple SNORT! from me! This is a big deal...as I worry about my SSDI being yanked away.

Perhaps I will be one of the fortunate ones...and having multiple diagnosis of chronic viral infections (including chronic VZV activation), Myelopathy and me/cfs will "protect" ME. (IF my protestations are taken seriously!)

What about those that DON'T have lab tests/results or ANYTHING to back them up? Nothing but the word of a PWC?

But this example (imo) highlights the debate we are having here. I believe we are going to be seeing this more and more - ESPECIALLY with the new Health Care Reform, and Ins. co's are going to be on the lookout for ways to deny or limit treatments and coverages deemed unnesessary in the LONG TERM. Unfortunately, "Long Term" care and treatments are what "we" REQUIRE, in most cases!

(And I DO think that the timing is too coincidental to NOT be connected to Reeves and his "new" position...lots of time on his hands, too many ingrained erroneous opinions, LOTS of "Politics" involved AND $$$ and HE'S not giving up control!imo!)

(And THIS is the last I'll say about THAT...so no need to start a new thread:Retro wink

jackie:Retro smile:

 

[Dolphin]

Hi Cort and all,

I would have a problem with parts of all of those comments on exercise. I have seen more recent stuff by Cheney making very strong warnings about the problems with exercise.

The problem with promoting exercise is that I don't think it works (based on looking at research and talking to hundreds of patients, maybe more). And most patients are alredy pushing it, and either cannot exercise at all, or cannot exercise and carry out activities such as work, caring for their children and so on. There is also the problem that once you put the idea into patients heads that they can improve through exercise, it tends to be something of a recepie for disaster.

I feel myself that there is a US/UK difference on this issue (I am talking about the good doctors here. Before anyone has a heart attack at what I am about to say, I am not from the UK).

In the UK exercise intolerance was always emphasised as a cardinal sign of ME/CFS. Pacing has generally been recommended by the doctors who are good on ME/CFS. So patients can increase if they feel able, but the idea of exercise in itself as therapuetic treatment is generally not promoted by the good knowledgable doctors. The UK doctors are often more critical of graded exercise and know that the deconditioning stuff is unproven (and that there is evidence against it) and that the push to get patients to exercise to improve originally come from the CBT/Psychiatric school.

But my impression of some US doctors after watching talks and reading some of the literature is that many US doctors who are really good on some issues are quite poor on the exercise ones. They often suggest exercise where the UK doctors would not (and the UK ones would stress pacing.) I think there could be a few reasons for this (some of this is pure speculation on my part).

They might read about Eurpean studies which allegedly found graded exercise to be helpful, but didn't understand that many of these studies use very loose entry criteria (Oxford), for example.

And maybe the doctors in the UK, knowing the characters who are involved in the studies, are more wary of just taking the alleged results at face value and maybe they are inclined to be more questionning and dig deeper, and basically have a closer look??? There are specific people like Ellen Goudsmit PhD (a psychoologist with ME herself) who have done a lot of work in this area. Also some of the more vocal people in the UK are doctors, psychologists and the like who have the illness themselves so that might add to it also. They read a lot of the literature but having the illness also means they have personal experience.

Of course you do have Leonard Jason in the US. But I have not seen a lot of good doctors in the US advocate Pacing and be very good on the exercise issue. I do remember seeing a talk by Chia and he said that one thing he looks for is exercise intolerance in order to help him diagnose. I cannot remember exactly what he said now, but I remember thinking that it was exceptionally strong and good on exercise for a US doctor (he has a son with the condition).

One more thing is a lot of the US doctors seem to think Fibromyalgia and ME are basically the same, or very similar. I think this view is less common in the UK. Fibro patients do not necessarily have exercise intolerance (not the way we do) and some may even benefit from some exercise.

And I have often wondered if many of the US doctors see severe or very severe patients regularly because of the sorts of recommendations they seem to make. I think people were also thinking this about Bateman which is what led to some people asking whether Bateman saw severe patients (and one might have to see them regularly for their experience to impact on one's thinking). It was not a personal attack. It was because people read what was in the CME about severe patients and it just didn't fit their experience or knowledge. I have often wondered this myself from listening to what some (very good in general) US doctors have said.

And just in case I have wounded people in the US, on the other hand I think many US doctors are very interesting on testing for things likely to be abnormal in ME. (This may be partly because the US healthcare system is more privatised and the UK one more public so they are very restriced in the UK).

Anyway, just a few thoughts,

Orla

I think you make a lot of good points.

 

[Dolphin]

Lets say that 20% of the physicians somehow miss the point about exercise and they keep doing what they've always been doing, That still leaves us with 80% who now know that it must be done very carefully, that it should only be done when the patient has enough energy, that it should never make the patient feel worse, and that it should be done at very low levels regardless. I think that's really significant progress - I think overall that helps more than it hurts.

Cort:
(1) Your estimated percentages border on hyperbole, if the experiences documented on this forum and elsewhere are any indication. I don't think reading this CME could alter significantly (or at all) that kind of widespread recalcitrance and dogma.

(2) Even if we were to consider your estimations to be accurate, do you consider it acceptable that the 20% of "resistant" physicians reading the CME will now have additional information - from a CFS advocacy group no less - to convince them that they are right and to further deflect their patients' arguments? Surely, that is unacceptable damage.

(3) you forgot that the CME contains all that drivel about kinesiophobia, avoiding activity, "underdoing it", etc, that could negatively influence any physician's perspective on ME/CFS patients and activity or exercise. I don't know why those parts were ever allowed in the CME. Surely the First Commandment of any ME/CFS advocacy group is "Thou Shalt Not State or Imply That Any Part of a PWC's condition is All In Their Head!"?

I really think that any physician with half a brain who reads the CME will understand about the problems the physical exercise poses. That program describes in such clarity how physicians in the past have misunderstood 'exercise' and how damaging it can be that I really don't understand how the majority of them could come away not getting that. I really don't.

Cort:
You are saying, essentially, "I don't think many physicians are like that." While lots of others have been saying "trust me, I have HAD many physicans like that!" Perhaps without a controlled study we cannot prove that all those physicians would still be 'like that' after reading the CME, but it is safer to conclude from the many documented experiences that a very significant number still would be.

Furthermore, the CAA is supposed to be OUR national advocacy organization. We don't have to settle for 80% understanding (your rhetorical guess-timate). We can have our cake and eat it too, to repeat a cliche. Why can't the CAA make it clear enough so that 100% will understand it? I don't want to risk anyone getting hurt. Of course the CAA can't stop all the iatrogenic harm that goes on out there, but they can at least do the simple things right - such as make physician education material that is aimed at that 100% effectiveness, taking into account the realities of physician bias, misconceptions, or lack of wisdom (the polite way to put it! )

I think you make a lot of good points.

I also don't accept that the new exercise program has been proven to be 100% safe.

 

[bluebell]

Taking the baton for a sec...

You are so right. I'm sorry if people may not like my "tone" but I, too, am mad as hell, and I do not ever intend to stay calm and play dead.

Has anyone seen Angels in America? In the play, the angel repeatedly tells the character suffering from AIDS to "be still." The sick guy doesn't really take this advice, and survives thanks to the first retrovirals;-). Awesome play - the HBO version is also quite good. I often think about that angel's deadly advice, since my body is always telling me to be still. In our case, I'd prefer to think the angel would advise us to "be quiet."

Add my voice to the chorus of those who think that the prudent thing is to warn CFS patients of the very real dangers of exercise. One of those papers listed way back seems to indicate that exercise can lead to abnormally low oxygen levels in the blood. So I would guess brain damage, among other things, is a possible consequence.

All of us want to be more active. If I had my health back, the first thing I would do would be to start training for a marathon. Although my doctor thinks I am a loon, she believes me when I tell her that exercise makes me sick - but I think this is because she knew me before I fell ill, and knows that I love running too much to give it up without cause. Otherwise (and she is a smart, good doctor) I feel confident she would be on me to move around more. I have tried gradually doing more physically and it always, always, always leads to a crash. And now I can't even walk around the block with my son and the new dog. How I loathe this awful disease.

This is our life, but the average GP just does not have time to read or think deeply about CFS. That is why what they do read about our condition should be as accurate as possible. The papers that indicate that exercise is good for us are flawed. If one comes out with good methodology that uses the CC, I will eat my hat. Or run a marathon;-).

The use of the term "kinesophobia" strikes me as particularly cruel. It's like telling houseflies that they must give up their ridiculous, unhealthy arachnophobia. Please.

 

[The Phantom]

Off topic, too

If you have not already done so, please, please, please- channel all of your advocacy efforts and energy into submitting testimony to CFSAC by tomorrow, apr. 26 5 pm EST.

We can't stand back and let our patient organizations advocate for us, no matter how we feel one way or another about them.

please see here
http://www.forums.aboutmecfs.org/showthread.php?4462-Deadline-april-26-to-effectively-save-the-cfsac!

and here
http://www.forums.aboutmecfs.org/content.php?r=106

for further information

This is vitally important as it appears our little committee is fighting for its very existence.

I know this is off topic, but I want to join sarahg in urging as many people as possible to send written testimony to the CFSAC by 5:00 pm EDT today. There are two complete testimonies written here:

http://www.forums.aboutmecfs.org/showthread.php?4462-Deadline-april-26-to-effectively-save-the-cfsac!

that can be copied and pasted or edited by you. and sent to cfsac@hhs.gov

The second link is to Cort's post and has bullet points that can be elaborated. As someone said somewhere (I'm losing track of what I've read, so please forgive me for not giving due credit) numbers matter to the U.S. government, so the more testimony they receive the better.

The committee has shortened the meeting (one day instead of two) and shortened the time for the public to give testimony from five minutes to three minutes. They also are trying to limit the agenda to the CFSAC Charter (not XMRV, definitions, need for centers of excellence, more funding.....). To me, this says that they would prefer not to hear what we have to say. I think it would be good to respond by saying as much in writing as we can. Although the two testimonies posted on the first link are fairly long, the whole thread is fairly short. It won't take much time to read it.

By the way, I don't think any of us think the CFSAC is the greatest thing since sliced bread, but it's currently the only public forum we have to speak to the government in the U.S.

Over and out.

 

[jackie]

Phantom...im running out of time as its 9:30am calif. time - so sorry for being a knucklehead...but in your post #1701 i go to your blue link "...save-the-cfsac" copy and paste one(?) of the letters i'll find, right? (must copy as i havent brain/time to be original today!)...then send to next blue link cfsac@hhs.gov? have i got it right? (i know original would be better but something here is better than nothing i guess.) ok going to go and try this! thanks...j

 

[The Phantom]

Reply to Jackie

Phantom...im running out of time as its 9:30am calif. time - so sorry for being a knucklehead...but in your post #1701 i go to your blue link "...save-the-cfsac" copy and paste one(?) of the letters i'll find, right? (must copy as i havent brain/time to be original today!)...then send to next blue link cfsac@hhs.gov? have i got it right? (i know original would be better but something here is better than nothing i guess.) ok going to go and try this! thanks...j

Yes. The first page of save-the-cfsac blue link has a long post by Gerwyn that's a letter about DSM5, not the CFSAC, near the top. Scroll down to the bottom of the first page and you will find testimony by jspotila. You can use that or you can use my testimony on the second page near the bottom. I have 2 posts, one is a preface and one is testimony. It says what they are in the title box.

Good luck! You can PM me if you have a problem. I still have to get my testimony sent in, too. Mine may change a little when I proofread it again. I don't think it hurts for them to hear the same thing more than once. Also, if they get a bunch of emails at once it will get their attention.

 

[The Phantom]

2 more letters to choose ideas from, still off topic

I just wanted to let everyone know that 2 more great letters to the CFSAC have been added to the save the cfsac thread at http://www.forums.aboutmecfs.org/sho...save-the-cfsac!.

It's possible that Gerwyn will remove the DSM5 post to make the thread easier to navigate, so the directions given to Jackie above may change a little.

There are more than 2 more hours to submit something. It doesn't have to be long.

CFSAC's email address is: cfsac@hhs.gov

Sorry to repeat--I'm just trying to make it as easy as possible.

 

[Dolphin]

Please remember that the CME states that exercise can be very damaging to CFS patients and that patients should not exercise to the extent that they ncrease their symptoms. So if you couldn't exercise without getting worse -and it sounds you couldn't then they absolutely wouldn't ask you to. For very ill patients they simply talked about 'range of motion' exercises such as moving your arms up and down and grasping things. I assume that's what they would have reccommended to you - hopefully those 'exercises' would not have caused you organ damage.

But if she (Brenda) was at a state where any exercise would have been damaging, according to the above argument she could only find this out by exercising in the first place! That is, as I put in bold above, she would come to this realization only if she tried to exercise and it made her worse. But if one was in a condition where any 'exercise' that was too much would be damaging, even that attempt would be unsafe..

Yes, drug companies wouldn't get away with this ("We know the other protocol for taking this drug is unsafe but this one is perfectly safe even though we haven't actually really researched it on many patients. Just trust us").

Furthermore, you took that bit of the CME out of context:

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.

As you can see, the grasping and so on is just the 'first step'; after that the recommendation is to increase activity to the point of essential ADL's. What on earth makes them think a severely ill ME patient can "recover" to that level simply by graded activity?? What are they talking about?? Patients aren't bedridden by their deconditioning - which would be the only way to explain the improvement to that higher level by graded activity alone - they are bedridden by the primary disease mechanisms of ME/CFS. (Deconditioning is a secondary effect of any disabling disease). Obviously the author of this section didn't understand this basic concept.

Being able to handle our own ADL's is a dream for so many of those of us with severe ME/CFS. Believe me, it is humiliating having to be "bathed", or fed, or have your food cut up for you, or helped to walk a few steps to the bathroom. If anything, at all but my worst, I constantly pushed to do things myself to avoid the feelings of shame or helplessness that come with that, but always paid heavily for it. Like Robin described earlier, when I improved it was very sudden, unrelated to any exercise. When I later couldn't sustain the improved levels or crashed, it was sudden; in the former case it really felt like I had been cruising along carefully and then ran right into a wall. There was no more "forward" or "up". And at the same time I noticed I couldn't continue even what I was doing without sacrificing something else (like sitting up to eat lunch). None of this had anything to do with deconditioning, and no graded activity approach could fix it (I tried anyway). It appears that this is the experience being related most frequently on this forum and elsewhere among moderately to severely affected people.

A doctor reading that section of the CME could easily conclude that the severely ill patient is in this state due to prolonged immobility and deconditioning and should be capable, eventually, through carefully graded activity, to reach a certain level of self-care (ADL's - activities of daily living, btw). That, of course, would be WRONG. And there is no indication in that section that this might very well be impossible and in fact dangerous for many of these patients. So what's that doctor going to think? Especially when he later reads this:

Some patients become fearful that any exertion will trigger symptoms (kinesophobia), and thus become couch- or bedbound.This, however, only leads to stiffness, soreness, and severe deconditioning. Such individuals are encouraged to initiate a progressive program of stretches and range-of-motion activities and then add low-level physical activities like short walks or floating in a pool.

OK, I will hope for the moment that all of us, including Cort, agree that this is complete and utter bullsh*t, so I will return to the perspective of the average doctor again. He has read the previous stuff, then comes upon the above (which follows immediately after a mild case study), from which it is possible to conclude that "couchbound or bedbound" patients either all have 'kinesiophobia', or that some do (obviously a significant proportion, such that it was worth mentioning at this relative length within the CME). The context of the statement is unclear enough that the former could be the conclusion if the Joe Doctor in question isn't very smart, or is already biased in that direction (or both). But even if only the latter is the conclusion, the damage done to the doctor's perspective on the patient's severe disability is obvious. Even a smart doctor should not have this terrible misinformation about 'kinesiophobia' put in his/her head. It is at least likely to further distort the view that was already being distorted by the passage I quoted previously. It is not reasonable to expect that a doctor will read this section and counter it with quotes selectively pulled from elsewhere in the CME for the very purpose of countering it, as you keep doing, Cort.

A point on logic, before I go. I have noticed the repeated argument that "doctors will read this and understand properly" based apparently on no data, and another that "I have had no bad experiences with doctors" (implying that the prevalence of bad experiences could be mitigated by a single person's experience). Both of these arguments are on poor logical footing to begin with, but to advance them in the face of many, many testimonials to the contrary is not logical in the least. It is akin to someone saying "I have never been a victim of a crime in my neighborhood, therefore my neighborhood is safe" (or at least has a low crime rate), despite having read story after story in the newspaper about crimes in his/her neighborhood. The correct conclusion would be "I am quite fortunate not to have been a victim of a crime, as I live in a high-crime neighborhood."

Yes, good points.

A general problem I have with exercise programs for the illness is that one doesn't know what may come up later in the day: most people have others who can create demands somewhat out of the blue e.g. children, partner, relatives, pets (e.g. get ill, dirty, etc). Perhaps responsibilities to do with a job. Or something happens where you live (a problem of some sort) or any other random or accidental event. If you've already used up a lot of your energy quota for the day exercising you can then over-do it. While it's hard to do a few exercise sessions across the day as that might mean a lot of showering, changing, etc.

For example, you start walking for five minutes or whatever. You gradually realise you might be able to work up to 10 minutes after a period. However, then you're hit with something later in the day one day which means you've actual overdone it. While if you hadn't done the walking or hadn't increased from five minutes, you might be ok. Keeping some energy "in the tank" seems to me can be safer. This is an idea in my head that isn't fully developed.

 

[gracenote]

A general problem I have with exercise programs for the illness is that one doesn't know what may come up later in the day: most people have others who can create demands somewhat out of the blue e.g. children, partner, relatives, pets (e.g. get ill, dirty, etc). Perhaps responsibilities to do with a job. Or something happens where you live (a problem of some sort) or any other random or accidental event. If you've already used up a lot of your energy quota for the day exercising you can then over-do it. While it's hard to do a few exercise sessions across the day as that might mean a lot of showering, changing, etc.

For example, you start walking for five minutes or whatever. You gradually realise you might be able to work up to 10 minutes after a period. However, then you're hit with something later in the day one day which means you've actual overdone it. While if you hadn't done the walking or hadn't increased from five minutes, you might be ok. Keeping some energy "in the tank" seems to me can be safer. This is an idea in my head that isn't fully developed.

I think this is a good idea you're working on tomk. No matter how well we plan, real life has a way of adding extra demands. Keeping some energy in the tank sounds necessary.