1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Leptin
Andrew Gladman reflects upon the recent IACFS/ME conference and the buzz surrounding a small molecule, leptin.
Discuss the article on the Forums.

Dr. Donohue: "Try Exercise for Chronic Fatigue"

Discussion in 'General ME/CFS News' started by Merry, Mar 2, 2012.

  1. SOC

    SOC Back to work (easy, part-time work)

    Messages:
    4,444
    Likes:
    4,375
    USA
    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?
  2. Sing

    Sing Senior Member

    Messages:
    1,293
    Likes:
    408
    New England
    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!
    ahimsa likes this.
  3. PhoenixDown

    PhoenixDown Senior Member

    Messages:
    257
    Likes:
    229
    UK
    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?
  4. alex3619

    alex3619 Senior Member

    Messages:
    6,003
    Likes:
    7,960
    Logan, Queensland, Australia
    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
    taniaaust1 and ahimsa like this.
  5. ixchelkali

    ixchelkali Senior Member

    Messages:
    1,105
    Likes:
    262
    Long Beach, CA
    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.
  6. taniaaust1

    taniaaust1 Senior Member

    Messages:
    6,773
    Likes:
    3,360
    Sth Australia
    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.
    ........

    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.
  7. Merry

    Merry Senior Member

    Messages:
    1,357
    Likes:
    604
    Columbus, Ohio, USA
    ixchelkali, I understand what you are saying. Thanks.
  8. Merry

    Merry Senior Member

    Messages:
    1,357
    Likes:
    604
    Columbus, Ohio, USA
    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.
  9. taniaaust1

    taniaaust1 Senior Member

    Messages:
    6,773
    Likes:
    3,360
    Sth Australia
    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.
  10. Foggy

    Foggy

    Messages:
    76
    Likes:
    16
    Australia
    Another pillock doctor!
  11. jimells

    jimells Senior Member

    Messages:
    325
    Likes:
    353
    northern Maine
    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!
  12. Hell...Hath...No...Fury..

    Hell...Hath...No...Fury.. Senior Member

    Messages:
    265
    Likes:
    248
    England
    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 :eek:
    ahimsa likes this.
  13. Merry

    Merry Senior Member

    Messages:
    1,357
    Likes:
    604
    Columbus, Ohio, USA
    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.
    ahimsa likes this.
  14. PhoenixDown

    PhoenixDown Senior Member

    Messages:
    257
    Likes:
    229
    UK
    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.
    ixchelkali, Valentijn, Merry and 2 others like this.
  15. Hell...Hath...No...Fury..

    Hell...Hath...No...Fury.. Senior Member

    Messages:
    265
    Likes:
    248
    England
    That is so so true, and it only takes a glance or a sentence to know when you're in the presence of it.
  16. Merry

    Merry Senior Member

    Messages:
    1,357
    Likes:
    604
    Columbus, Ohio, USA
    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.
  17. svetoslav80

    svetoslav80 Senior Member

    Messages:
    478
    Likes:
    137
    Bulgaria
    Rofl

See more popular forum discussions.

Share This Page