Dr. Donohue: "Try Exercise for Chronic Fatigue"

[SOC]

What about those of us who don't have chronic immune dysfunction but don't have just chronic fatigue either. What label would you give them? I think you're presenting a false dichotomy between immune dysfunction and chronic fatigue/depression/laziness.

Are there any of us without immune dysfunction?

I know most of us haven't been adequately tested, but of those who have does anyone remember the proportion that do not have some type of immune dysfunction?

 

[Sing]

That's where I disagree with you my friend. It is pretty easy and rather appropriate to call out the flawed logic of a GP who says "You're only ill because you think you're ill, and we won't be giving you any tests, because that would be a waste (nothing will show up), because the lack of positive tests shows there's nothing wrong with you even though we haven't giving you those tests or any adequate tests".

Failing to blame the GP's is an enormous problem. Nothing of this is a mere accident, it's a serious failure of their duty to healthcare, they are guilty at the very least of supreme carelessness, and arrogance that goes beyond grand, all at the detriment of our healths. If the law punished them for this negligence and disrespect of the scientific method, then we wouldn't be facing all of these problems, our lives would be significantly different (at least mine would), but they carry on because they know they can get away with sloppy work and carelessness because they have no one to answer to.

My understanding is that doctors' performance is only judged in terms of the common standards for medical practice--in other words, not by whether it is in accordance with the scientific method or what is true or what is helpful. When a doctor is sued, he only has to show that he did what was considered normal accepted practice. The insurance companies and govt have further standardized medical responses, making medical practice like following standard recipes in a cookbook. Our condition either isn't in the "cookbook" or at the very least, isn't accurately represented there, so doctors not only can get away with repeating all the errors of the past, they are actually expected to--that is, they risk censure and even possible lawsuits if they stray from those "accepted practices".

I am constantly annoyed at how ME/CFS, by whatever name, is not in this "cookbook". Further, my most difficult symptoms are also ignored or else linked to other, entirely different conditions. Blood pressure concerns are focussed on high, virtually never on low. Dementia symptoms are linked with Alzheimer's, not what we struggle with decades before medical people would usually consider Alzheimer's. Insomnia which goes on for decades, unlinked to sleep apnea or poor sleep habits--what do they know about this? Exercise which sets people back rather than strengthening them--I could go on. What we have contradicts the norms and stands in the shadows in so many ways. We need our own (bloody, big) chapter in that cookbook!

 

[PhoenixDown]

Are there any of us without immune dysfunction?

I know most of us haven't been adequately tested, but of those who have does anyone remember the proportion that do not have some type of immune dysfunction?

Then how can you know for sure than an individual has an immune dysfunction? What if in some patients their symptoms have a neurological but not immunological cause?

 

[alex3619]

Hi PhoenixDown, my understanding is that immunological markers peak at about 86% accuracy in diagnosis (lmw RNaseL plus elastase), wherease neurological peak at about 92% (spectral coherance EEG). I have no idea how accurate the latest NK cell dysfunction testing is. In some very short time I expect to see a lot more information. In addition to these vascular testing is also showing promise. ME appears to be multiple system dysfunction: immune, neuro and vascular markers are semi-reliable. I wonder what would happen if we started combining biomarkers? Bye, Alex

 

[ixchelkali]

Unfortunately, a doctor doesn't have to be either stupid or sadistic to give this advice. If he or she is a general practitioner, they're not going to be an expert in every disease they encounter. So they consult the "best" sources of information, the CDC, Medscape, the Mayo Clinic, or their medical school textbooks. And they'll find exactly what Dr. D said. In fact, it would be considered irresponsible for a doctor writing a column for a general audience to write something different from those mainstream sources.

Until we can get what's out on the CDC website changed, and until we get some REAL experts instead of Gijs Bleijenberg or Peter White writing the medical textbooks, that's not going to change. Without that, even if we present research to the contrary or cite experts from the IACFS/ME, we have no credibility. And you can't exactly blame the Dr Donohue's of the world, or the thousands of ordinary family physicians we have to go to.

Because Dr. Donohue's answer did read as a cut and paste job, I had supposed he'd simply gone to the CDC website or similar. But why from the list of treatment options listed at the CDC website did he choose only graded exercise therapy? The guy's a dipshit.

He advertises himself as offering "experienced medical advice to help you with nearly 40 health conditions" at this website:

http://www.rbmamall.com/drdonohue.html

Buy his booklet on Chronic Fatigue Syndrome today!

Sorry, ixchelkali, I can't agree. I do blame the Dr. Donohues of the world.

Okay, I accept your correction. We CAN blame them. But I still think the only way we're going to be able to effectively change things is to get the CDC to change what's on their website and to get accurate information into the medical schools and textbooks. Those are the sources that average GP's look to for "expert" advise, rightly or wrongly. Getting well done CME courses and grand rounds could help, but you have to persuade the doctors it's worthwhile to attend. There's been so much damage done by inaccurate info about this disease within the medical establishment that it's going to take a long time to undo it, I fear.

 

[taniaaust1]

By definition, it is fatigue that lasts more than six months. The fatigue does not improve with rest. In addition to exhaustion, memory impairment, joint pain, diffuse muscle pain, new headaches, tender neck nodes, sore throat, and sleep that doesn't refresh can be part of the syndrome.

I think that definition bothers me even more then the mention of GET. He didnt distinguish at all any difference between chronic fatigue and chronic fatigue syndrome by saying "by defination its fatigue which lasts six months" ..then adding it can have other symptoms but not actually stating that it HAS TO HAVE so many of those other symptoms to be CFS.

I hate too that part that "the fatigue dont improve with rest".. I think put that way is confusing to any out there who may have this but are undiagnosed. I know my "fatigue" does "improve" with rest.

Most of us do rest a lot as it can help us feel better some. Saying the fatigue dont improve with rest makes it sound like its quite useless us resting.... No wonder everyone who hasnt got ME/CFS likes the idea of suggesting GET to us.

It would be correct rather to say that one dont "recover" from ME/CFS by rest as the illness is always there on activity. We cant do much as we get many symptoms when we do, which "may" settle on rest.
........

Until we can get what's out on the CDC website changed, and until we get some REAL experts instead of Gijs Bleijenberg or Peter White writing the medical textbooks, that's not going to change. Without that, even if we present research to the contrary or cite experts from the IACFS/ME, we have no credibility.

I think the same. The CDC are the ones responsible for the whole ME/CFS mess and the fact of our doctors pushing GET and CBT cause that is all they had at their site for years.

 

[Merry]

Okay, I accept your correction. We CAN blame them. But I still think the only way we're going to be able to effectively change things is to get the CDC to change what's on their website and to get accurate information into the medical schools and textbooks. Those are the sources that average GP's look to for "expert" advise, rightly or wrongly. Getting well done CME courses and grand rounds could help, but you have to persuade the doctors it's worthwhile to attend. There's been so much damage done by inaccurate info about this disease within the medical establishment that it's going to take a long time to undo it, I fear.

ixchelkali, I understand what you are saying. Thanks.

 

[Merry]

I think the same. The CDC are the ones responsible for the whole ME/CFS mess and the fact of our doctors pushing GET and CBT cause that is all they had at their site for years.

tania, here's the treatment list at the CDC website at present:

Treatment Options

There are many different types of treatment and management tools available for Chronic Fatigue Syndrome. These include:

Professional Counseling

Cognitive Behavioral Therapy (CBT)

Graded Exercise Therapy (GET)

Symptomatic Treatment

Alternative Therapies

Support Groups

Pharmacologic Therapy

Sleep Hygiene

Pain Therapy

Orthostatic Instability Treatment

Antidepressants

--END of copy and paste


I don't know the history of CDC website information on CFS treatment. Maybe someone else here has saved screen shots.

 

[taniaaust1]

Yeah they are there now, I believe those other things werent all originally on it. I was happy in more recent times to see those there.

I think its got much better with time. I do know that they've changed it many times since I first saw their pages on CFS.

The doctors I had in the past who viewed it and hence tried to go by it when the info was poorer.. I dont have now. Im far more knowledable on it.

Quite possibly Dr Donohoe read stuff there past times and hence believes there is only GET and CBT and that they are successful.

 

[Foggy]

Another pillock doctor!

 

[jimells]

My mom sent me a clipping of the article, with no letter or explanation. I just ignored it. Now she has sent me an email telling me about a TV show on astronauts with POTS. Apparently CFS-style exercise cures them, and will cure me as well.

It doesn't seem possible to counter the garbage spewed out by the press. If I reply that Donahue is wrong, or that GET doesn't work, I'm just being negative and critical. I guess I should just write to her about the fine weather today (50 F. and sunny - woohoo!) and ignore her email.

The whole exercise-as-treatment is so obviously bogus. Like many other people here, if exercise were the cure, I would've never gotten sick in the first place!

 

[Hell...Hath...No...Fury..]

You know the quote 'Chronic Fatigue that doesn't improve with rest' I was trying to read it from an idiots point of view which is so much easier when i'm brain dead like now, and its as though they're reading... it doesn't improve with rest... therefore stop resting... and if it doesn't improve with rest, it therefore must improve with exerice instead, and because it doesn't improve with rest... rest is therefore unhelpful and not beneficial so stop them from resting as they're making it worse by sitting on their backside all day every day.
Could do with updating that sentence to 'Chronic Fatigue that doesn't improve with rest OR exercise.'
Just to see what they might come up with then

 

[Merry]

Foggy, you are so right with "pillock doctor."

jimells, sorry to hear that you received the Dr. Donohue column from your mother, and she emailed you about astronauts who exercised their POTS away. Perhaps a letter from me would cure your mother?

Hell...Hath...No...Fury..., I had never thought about that interpretation of "Chronic Fatigue that doesn't improve with rest." Oh no.

 

[PhoenixDown]

A lot people will believe on faith that you have a behavioural illness or only have a lack of will power or only have a loss of moral. There is no reasoning with them. There is no evidence that they are willing to accept, it doesn't matter how many times you trying exercise, or going beyond your limits, they will act as if you are a liar if the results of that experiment is that your pain or fatigue worsened. Anything that contradicts their belief system is a lie from their point of view. You just can not reason with their faith. You'd have the same job convincing a Theist that god does not exist.

I'm sorry to hear that your mum has this faith.

 

[Hell...Hath...No...Fury..]

That is so so true, and it only takes a glance or a sentence to know when you're in the presence of it.

 

[Merry]

A lot people will believe on faith that you have a behavioural illness or only have a lack of will power or only have a loss of moral. There is no reasoning with them. There is no evidence that they are willing to accept, it doesn't matter how many times you trying exercise, or going beyond your limits, they will act as if you are a liar if the results of that experiment is that your pain or fatigue worsened. Anything that contradicts their belief system is a lie from their point of view. You just can not reason with their faith. You'd have the same job convincing a Theist that god does not exist.

I'm sorry to hear that your mum has this faith.

Sad to say, but you are probably right, PhoenixDown, about jimells mom -- and so many family members and friends of people with ME. Thanks for your input.

 

[svetoslav80]

A smart person under the influence of bad ideas can wind up finding even smarter and more ingenious ways to be stupid.

Rofl