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

CBS

Senior Member
Messages
1,522
<snip>

I would propose that instead of ANY recommendations on exercise in doctor educational materials, they report the Drs Lights studies showing how PWCs bodies respond so extremely differently from other illnesses, not to mention "normals", and then teach them not to prescribe or encourage exercise AT ALL. The concerns of being "deconditioned" have been disproven over and over; PWCs are already doing all they can and are no more deconditioned than sedentary healthies, so why divert any attention or energy towards an idea that basically only gives the docs the illusion they are doing something.

As for Bateman et al seeming to promote exercise programs, I wonder if they may have changed their minds since the Drs Light's studies came out? Or that they might be succombing to the impulse to provide docs with the illusion that they are doing something helpful?

Oerganix,

Just to put this in perspective, everyone here may not be aware that it was Dr. Bateman who supplied the subjects for the Light studies, who recruited Dr. Singh to test the Light subjects for XMRV, coordinated the testing of the Light subjects for XMRV (in the process of being published) and who subsequently recruited another 100 CFS subjects for XMRV testing to augment the XMRV testing fo the Light subjects (also being analyzed and prepared for publication at this very moment).
 
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Gerwyn

Guest
Marco,

I appreciate your well stated summation. The only change that I might suggest is that the dangers cannot be over emphasized. Long before death, it is my personal experience that over activity (recognized by some as neural dysfunction) can lead to permanent neural damage. I also worry that sub-clinical states of neural dysfunction may lead to significantly reduced neural capacity (reserve?) in later life that manifests it self years down the road.

Absolutely 100% correct
 
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Gerwyn

Guest
I'll ask her if she does home visits. It would not surprise me in the least to find out that she does. As for the exercise study, I have met some of the participants and believe me, they are far from hail and hearty. Some have trouble just getting from the car to the office. It was a huge sacrifice for these people to participate and Dr. Bateman has repeatedly stated her appreciation of how hard and how much of a sacrifice this was for those who could and did participate.

the patients i,m talking about could not get from the car to the office.To see them she would have to do home visits
 

Martlet

Senior Member
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Location
Near St Louis, MO
I am glad you had a positive experience but I,m afraid that all the surveys consistently show that your experience is abnormal to put it mildly.

Perhaps it is mostly those with a bad experience who respond to surveys?

I am not saying that there are no bad doctors. There clearly are! I don't take my own experience to be the only valid one, but that seems to be what is happening on the other side of the argument. And let's look at this coolly for a moment. I saw a total of five doctors at the US air base. Here in the USA, I have seen my primary care physician (Internal Medicine), have been referred to another Internal Medicine physician who was doing Florinef trials, a cardiologist who checked my irregular heartbeat, a gastroenterologist who does my colonoscopies, and all four doctors at our practice's urgent care clinic. That's a total of thirteen doctors, not counting a couple I have seen in the ER or my daughter's doctor and one at A&E when I had a severe allergic reaction while in the UK. Have I really just been lucky that I didn't get a single one who viewed ME/CFS negatively? I did have an anaesthetist who said he doesn't know much about it but who took my word, but my experience has been fantastic and I find it hard to believe that I have just been fortunate enough to have seen the only dozen-and-a-half doctors in the USA and UK who at least understand this to be a physical disease. I mean, is that not highly unlikely? And isn't it likely that those who have had/are having a similarly good experience don't join ME groups or go on ME/CFS forums as much as those with bad experiences who feel they are not being heard?
 

dannybex

Senior Member
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3,579
Location
Seattle
Oerganix, with all due respect, I did not take your comment out of context. You said "Nobody with polio or MS has to put up with this..." and I showed that indeed they're advised to exercise, tailored of course to their abilities.

You have a good point about the fact the both illnesses are now considered to have viral causes (although some would include environmental factors as well), but I guess my point would be that if we wait until EVERY doctor in the world believes this is a conditon due to physical causes, then we'll be waiting a long, long time (as we already have). There are many different treatments/tests out there now...the problem of course is that most aren't covered by insurance...so we don't have access to them.

Anyway, I still say it's not a black & white issue. But we can agree to disagree, I hope. :Retro smile:
 
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Gerwyn

Guest
Perhaps it is mostly those with a bad experience who respond to surveys?

I am not saying that there are no bad doctors. There clearly are! I don't take my own experience to be the only valid one, but that seems to be what is happening on the other side of the argument. And let's look at this coolly for a moment. I saw a total of five doctors at the US air base. Here in the USA, I have seen my primary care physician (Internal Medicine), have been referred to another Internal Medicine physician who was doing Florinef trials, a cardiologist who checked my irregular heartbeat, a gastroenterologist who does my colonoscopies, and all four doctors at our practice's urgent care clinic. That's a total of thirteen doctors, not counting a couple I have seen in the ER or my daughter's doctor and one at A&E when I had a severe allergic reaction while in the UK. Have I really just been lucky that I didn't get a single one who viewed ME/CFS negatively? I did have an anaesthetist who said he doesn't know much about it but who took my word, but my experience has been fantastic and I find it hard to believe that I have just been fortunate enough to have seen the only dozen-and-a-half doctors in the USA and UK who at least understand this to be a physical disease. I mean, is that not highly unlikely? And isn't it likely that those who have had/are having a similarly good experience don't join ME groups or go on ME/CFS forums as much as those with bad experiences who feel they are not being heard?

The surveys are in the public domain and we are talking about the experiences of thousands of patients.Their experiences ,unfortunately, did not match yours.The probability of the experiences of such large numbers not being representative of a population norm would be incredibly small
 

oerganix

Senior Member
Messages
611
Oerganix,

Just to put this in perspective, everyone here may not be aware that it was Dr. Bateman who supplied the subjects for the Light studies, who recruited Dr. Singh to test the Light subjects for XMRV, coordinated the testing of the Light subjects for XMRV (in the process of being published) and who subsequently recruited another 100 CFS subjects for XMRV testing to augment the XMRV testing fo the Light subjects (also being analyzed and prepared for publication at this very moment).

CBS, thank you for supplying the details. I had forgotten them, but I was aware that Dr Bateman was involved. I wasn't clear when I said she might have changed her mind. I meant that the quotes from her on exercise, on the CAA materials, seem to be fairly old, surely predating the Lights' study. It will be interesting to see if the new research prompts her to reconsider her earlier opinion. I have no doubt she is "on our side". The science of CFIDS is still evolving and any of the good docs can change their opinions, with new evidence. And the good docs, "on our side", can have differences of opinion without being in the evil Reeves/Wessely/Sharpe et al camp.

While probably not doing a lot to find out the cause, these studies certainly have the potential to develop a biomarker test that could "prove" the presence of ME/CFIDS, and that would be worth a great deal. They may also show us how the "cause", whatever it is, damages our bodies and help point research in the right direction. I look forward to the publication of those studies.
 

CBS

Senior Member
Messages
1,522
the patients i,m talking about could not get from the car to the office.To see them she would have to do home visits

I do appreciate that she would have to do home visits for the patients you are concerned about (not those very sick but still capable of participating in the exercise study). I think I understood your question as that is exactly what I intend to ask her (I should have separated the second sentence from the third by beginning a new paragraph - my bad).

Also, from my earlier post:

Dr. Bateman watched her own sister die from complications of CFS. My guess is that she spent years at her sisters home watching and feeling quite helpless as she got a very painful lesson in just how deadly CFS can be. Three months ago Dr. Bateman and I have sat down and talked about this very subject (how CFS can/will lead to death if you don't stay within your limits)
 

jackie

Senior Member
Messages
591
you're quite right, martlet. (and i'm glad you haven't experienced the worst of our healthcare sytem in the US...especially with young children...and i'm sure you count yourself fortunate! when my kids were little i had a better plan and i was able to sleep nights without the worry that they might miss out on some treatment they needed).

All of my docs (primary care, Infectious disease and Neurologist) certainly BELIEVE i have me/cfs and that it is a neuro-immiune disease...that's hasn't been in question since the "early days" of obtaining a dx, about 15 years ago...asking for "non-valuable tests" is another thing. after all...i already HAVE MY dx, they say). They are NOT "bad" docs...just busy ones! Lots of info to keep abreast of and too little time (and in some...too little inclination, i think)

The id doc KNOWS without a shadow of a doubt what can happen to us with exercise/activity (and would not suggest it)...the primary care feels bad for me but his guidelines require him to gently remind me of the possibility of the benefits of exercise...and the neuro hasn't a clue and couldn't care less (he treats many ms patients...and i dont know if it is STILL recommended, but neuros USED to allow spasticity (untreated) in ms folks because it helped to keep them upright. Yikes! I HAVE spasticity (untreated in both my legs, and it HURTS!)

But even if I'D NEVER had a problem with pem/relapses - i would still (after reading of the terrible suffering that many with this problem have recounted...and my own personal experience) prefer that ANY reference to an exercise program (even mildly suggested, cautions and strong warnings, specific recommendations etc,) be removed - and replaced with "contraindications"....and no other mention of it. possibly a separate pamphlet with suggestions/studies IF a PATIENT requests info on exercise. This is just what I'D prefer to see.

Obviously, in my sitiuation, if i chose a "ppo" as my insurance...i could look around and might find more "knowledgable" cfs docs (i can only afford an "hmo" plan...i have a CHOICE of 2 neuros, 3 primary care, and 2 id docs in my area - one of which is already a leading expert...which is a lot more than many have, i know. if the "fit" isnt right i can switch once a year)...but i'm not really expecting to find better ones under my plan.

and if they would stop suggesting exercise...i'b be content with them (and feel pretty lucky to have any at all!...let alone a "team" of three! ive given up on requesting "out of the ordinary" testing...and important markers such as T-cell count, viral loads are being taken care of by my excellent id doc.)

imo and in my experience, most docs in the US are over-worked and over-booked...and may not be as receptive to gidelines for our disease as they should be ...when it would be just as easy to follow those recommended by our government for the general public. like exercise.

(as Koan would say...."just sayin!")...j

just thought of this...when i saw my id doc last week, he was MOST interested in my new Black Eye! i had been having a very tough time walking that week (from pem, ironically!), got off-balance/spatially "challenged" and pitched into a familiar cupboard! after some ribbing..he earnestly questioned me about EVERY movement...EVERY activity...EVERY energy expenditure, i'd made in the days preceding this event. and he told me to expect MORE pem from this "trauma".
 

Dolphin

Senior Member
Messages
17,568
Maybe it is too late for cooperation. War is what happens when diplomacy fails. Which side (there are more than two sides here) gets to decide when diplomacy has been given a fair shake. Lots of casualties.

At the very least, I have very real concerns that ''Kill the CAA" will end up costing all of us quite a valuable asset on the research end of things (and unnecessarily so).
Yes, I agree, that too much aggression can be bad and I personally wouldn't like the CAA to be "killed".

Personally I think the people who are at least equally as responsible for the CME are the experts whose names are on it rather than simply the CAA. I said something similar early in the thread. This issue of who do you get to write management guidelines needs to be discussed.
 

jackie

Senior Member
Messages
591
just to be clear - in my case i never said that any of my docs didn't BELIEVE in me/cfs - i know they do...some don't "get" - and perhaps WON'T "get" the pem/activity/exercise bits (and one is a lousy speller)....and that is what is in question here, i think?

I'D like to take a survey. nobody has ever asked me to take one. maybe i AM posting on a forum because im not being heard and nobody listens to me. I have to think about that. if so...im glad im here because i think somebody IS listening to me (thank you koan...and what jerry said, too!)

btw...wasn't it dr. byron hyde who made home visits (the first visit was just to make contact..i think he was secretly evaluating folks to try and look through their "visitor" faces!...then he went back a few days later to see what effect his visit and their natural effort to appear "ok" had had on them! smart man! oh to have a doc like THAT!

im posting on THIS thread (probably stupidly and at great risk of you-guessed-it!...PEM) because i wanted to make my one wish known...i know we cant always get what we want (and in my experience we rarely do, with this disease!)...but if we dont even ASK....?)

j (all worn out now)
 

Dreambirdie

work in progress
Messages
5,569
Location
N. California
There is so much *ENERGY* here on this thread...
I'm hoping you all will harness some of it for a couple very productive causes:


1. April 20 is the deadline for public comment regarding the DSM-5 classification of CFS as a Somatoform Disorder.
If you haven't dropped them a note about it, then PLEASE DO IT TODAY.
Link to leave comments http://www.dsm5.org/Pages/Default.aspx

More info here: http://www.forums.aboutmecfs.org/showthread.php?3062-DSM5-Ticket-back-to-Reevesville&p=70949


2. April 26 is the deadline for saving the CFSAC.
Please read Cort's blog on this and send your testimony this week. http://www.forums.aboutmecfs.org/showthread.php?4462-Deadline-april-26-to-effectively-save-the-cfsac!
 

jackie

Senior Member
Messages
591
db...i DID post the "everybody knows about me" video on my FB page (which im pretty darned proud of - since we all know I cant "post" or "link" worth a darn!) And i DID have TWO responses! (one was my own daughter...but that's GOOD!)

But i will channel what remains of me and try to address both of the causes...as they are VITAL!
(and which i had conveniently FORGOTTEN about!:eek:...in the heat of the moment(s)!:eek::eek::Retro redface: thanks for the reminder!


i'm a little worried about how to word my note? maybe i'll copy somebody elses - that's the ticket!.....j
 

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
In anyone with a mitochondrial disorder the amount odf eaerobic excercise they can tolerate is limited by the degree of mitochondrial damage.Push them beyond that limit will further damage the mitochondria possibly irreparably.About 25% of ME sufferers are either housebound or bedbound

The following is from the 25% ME group and may give a small insight of the suffering of people severely affected by ME..

It has personal resonance for me as I have been there



People with severe ME will need help with personal care. When you are helping them, remember that all their muscles are very painful to touch. Please be very gentle. Try to work quickly and quietly, so they don't get tired... and be sure to keep them warm.

Depression in M.E. is usually a result of expending too much energy and is different from other types of depression, in that the person is most helped by rest and not by being encouraged to undertake more activity. This is because the depression is a result of doing too much. If the person does even more, the depression will increase.

Please remember that people with severe M.E. have difficulty propelling a manual chair due to weak arm muscles. If a manual chair is used, they would need to be pushed in it.

Imagine how you would feel if ...

... you got a bad virus: were so weak you could hardly walk; felt as if you had lead strapped all over your body; felt ill, in pain and sick all the time; and didn't even have the strength to get off the bed to go to the toilet... You'd expect to be better in a week or two, wouldn't you? So did I, but I was still the same years later.

... you wake up every morning feeling as if you'd been run over by a bus and had a general anaesthetic the day before.

... every muscle and joint in your body aches - your arms, your fingers, your legs, your neck. You have frequent headaches. You feel heavy as though extra gravity is pulling you down all the time. You feel dizzy if you stand or sit upright for any time, and there are no magic pills to make you feel better.

... you are cold and shivery a lot of the time - even with central heating and hot water bottles

... you constantly feel sick and dizzy and it gets much worse when you try to read, listen to music or radio, watch TV or have a conversation.

... any movement - even moving your arm - causes extra pain, saps you and makes you feel sick

... you're thirsty all the time, but reaching for a cup is impossible, or causes malaise or severe pain.

... you need to go to the toilet a lot, but you're often so weak you can't even turn over in bed

... you wake up in the night drenched with sweat, and shivering, but are too weak to have the bedclothes or your nightwear changed.

... you require help from other people just to cover your basic needs, but you get exhausted from the interaction this requires - sometimes you're so weak that they can't hear your voice. Even if you write things down for them, they still have questions.

... even with help from other people, having a bath or shower totally exhausts you, and sometimes you are suffering so much pain or weakness, that you can't even be washed in bed.

... your brain can't process information going in - so noise, movement and other stimulants make you feel sick, dizzy, and stressed. Even on good days - TV, music, people talking/moving can be like torture.

... you sometimes can't remember things like your name, your family and don't recognise people.

... you have to read things over and over, because you can't remember the beginning by the time you get to the end.

... it's a major achievement to make a short shopping list

... if someone asks you if you want blackcurrant or orange juice, you would get confused, because you can't remember both the options

... you can never find anything, because you forget what you're looking for as soon as you move your body to look for it. Even if you don't forget, just scrabbling about the bed for a pen can make you so exhausted that you have to lie flat for 20 mins

... Light can cause a dreadful migraine-type headache, nausea and acute pain in your eyes;

... Everyday sounds, like voices, can thunder through your head causing thumping pain;

... you constantly try to explain to people what your limitations are, so that they'll be a bit more sensitive to your needs, and they just think you're moaning...

... you have abnormal reactions to foods, dust, chemicals etc. which cause severe malaise and nausea.

... minor infections and viruses render you so ill that you require 24-hour care for months

... you have to struggle with feelings of frustration, despair and anger caused by healthy, active people saying things like "lucky you - not having to work" or "everyone gets tired - that's normal!"

... If you push yourself at all you develop worse problems e.g. blistered eyes and joints, acute pain, vomiting, migraine, muscle spasms, neuralgia, convulsions, faints, anaphylactic shock episodes, etc. At times your whole body seems to stop working... menstrual cycle, digestive processes, etc.

... People who know nothing about the condition keep telling you to try harder

... you spend each day yearning for all the things you've lost - independence, working life, hobbies, relationships, interaction with others. You'd love to be able to do more or go out, but it exhausts you so much that it can take days or months to recover. You can be stuck at home for months or years. ... Children can have ME too, and miss going to school, seeing their friends and playing.

Those are only some of the problems which face people with severe ME every day of their lives.


I know because I have been there every movement was agony and i could not lift my arma let alone stretch.

As for aerobic excercise and heart conditions if you push someone with stable or unstable angina,ventriculat tachcardia and so on to engage in aerobic excercise you could kill them

This is a wonderful passage that should be adopted by CAA, especially the parts Gerwyn highlighted.

I think CAA should also put in a little explanation that the studies indicate mitochondrial pathology is the culprit- the energy turbines are broken, so you have to fix them. In the absence of effective medical treatment this means rest to allow the body to heal the mitochondria to the extent it is able. Running these broken turbines harder only worsens the damage.

This explanation is essential because if a doctor doesn't have a model for why exercise would cause PEM then, by human nature, he will be very much less likely to believe that it does, despite being simply told that it does (without an evidence-backed pathogenic model). He is more likely to believe the false psych explanation.
 

Roy S

former DC ME/CFS lobbyist
Messages
1,376
Location
Illinois, USA
Moderator:

Roy, I am deleting your last cartoon for two reasons. Firstly, it was not even remotely funny but in fact quite offensive. Secondly, animated images such as that can be very disorienting for ME/CFS patients.

Everyone - Please tone down the rhetoric. Because someone holds a different point of view does not make them stupid. It simply means they have a different experience, just as valid as yours. I don't want to have to close this thread but will unless it moves on to something more productive.


This is what I posted that you censored because *in your opinion* it was offensive. The movement is only a small part of the picture. It is also already on this web site on another thread, and not posted by me.

http://frederatorblogs.com/channel_frederator/files/2009/06/beating_a_dead_horse1.gif

You later wrote to someone else:

"More productive" means to stop repeating the same arguments over and over in the hope the other person will "get it."

umm... do you know what "beating a dead horse" means?

In my opinion threatening to shut down this thread is offensive.
 

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
For me Dr Myhill explains it so simply and so well.....

"Graded exercise

This is positively harmful when CFS is active. I find it quite extraordinary that so many doctors seem to advocate this as a treatment. It is as if they are unable to distinguish between CFS and lack of fitness! Let's face it, if graded exercise worked then the diagnosis could not possibly be CFS. The only possible explanation I can think of as to why this has stuck in the medical folklore is that after a physician has recommended this to the CFS patient, the latter never bothers to attend again for useless advice. The doctor then believes he has cured the patient because they don't come back. Has anybody else got any better explanation"?

http://drmyhill.co.uk/wiki/CFS_-_treatments_which_are_not_worth_trying

A doctor who tells the truth about ME/CFIDS! No wonder they keep trying to take her license!
 

Dolphin

Senior Member
Messages
17,568
tomk said:
There are some treatment trials but they aren't highlighted much.

For example, the Jason et al (2007) study which found (if one uses the basic percentages) that
a pacing program
did better than
a CBT program (Wessely style - Deary from KCL came over and supervised it)
which did better than
Staci Stevens exercise program
which did better than
a relaxation, autogenic training and yoga group.

The severe did not take part in this trial.

Ho-Yen and Goudsmit have published on pacing (2009).
Leonard Jason has published on the energy envelope.

I agree that evidence-based can cause a problem.

Well yes. I would point out that they all showed some benefit.
Well, maybe, maybe not. On average 25% dropped out (we're not given a breakdown).

The number working in the exercise group went down from 41% to 33% (for the CBT and pacing/COG group, the percentages in work increased)

Some other info:
Out of the 18 outcome variables in Tables 3 and 5 of the trial, the exercise intervention (Staci Stevens' program - she oversaw it) wasn’t best for any of them. Don't have time/energy to see where the other 7 are.

For people who don’t have access to the full paper, Dr Ellen Goudsmit summarises it at:
http://freespace.virgin.net/david.axford/me-ref25.htm

Cort said:
I assume that the really severely ill did not take part in this trial or indeed any treatment trial.
Just to be clear, as I possibly wasn't, I wasn't complaining about the severe being excluded but some people may think that the exercise program may be more suitable for ambulatory people.

There have been some trials that involved severe patients e.g. inpatient, over the phone, or they come to your house, but they are less frequent and often are smaller.
 

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
...This is clearly a area that MUST be patient driven...

CBT and GET are dangerous labels as they are anything but patient driven but I haven't ever seen Cort promote either. There are many things that the Canadian Consensus Criteria gets right and patient driven pacing is one of them (so long as it is understood that the patient gets to say NO to anything).

Excellent point!
 

Dreambirdie

work in progress
Messages
5,569
Location
N. California
All the more reason to take action TODAY on issues pertaining to this:

1. April 20 is the deadline for public comment regarding the DSM-5 classification of CFS as a Somatoform Disorder.
If you haven't dropped them a note about it, then PLEASE DO IT TODAY.
Link to leave comments http://www.dsm5.org/Pages/Default.aspx

More info here: http://www.forums.aboutmecfs.org/sho...sville&p=70949


2. April 26 is the deadline for saving the CFSAC.
Please read Cort's blog on this and send your testimony this week. http://www.forums.aboutmecfs.org/sho...save-the-cfsac!
 
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