The Real ME: A Stock Photography Resource for the Media
We’ve all seen them in the news stories about ME/CFS: the guy in a suit at the office, yawning; the beautiful woman sitting at her desk with her immaculate make-up and elegantly coiffed hair, hand to her head and looking slightly pained.
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"Lost in Translation - The ME-Polio Connection and the Dangers of Exercise" (February 2016)

Discussion in 'General ME/CFS Discussion' started by Dolphin, Feb 8, 2016.

  1. Dolphin

    Dolphin Senior Member

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    alex3619, Valentijn, Sasha and 4 others like this.
  2. Dolphin

    Dolphin Senior Member

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  3. Dolphin

    Dolphin Senior Member

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  4. Dolphin

    Dolphin Senior Member

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    BurnA and ScottTriGuy like this.
  5. Old Bones

    Old Bones Senior Member

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    Well worth reading. Thanks, Nancy, for writing this document. And thanks, @Dolphin , for posting the link. I've been aware of the proposed polio/ME link since 1990. Too bad my awareness at that time didn't include the importance of rest, rest, and more rest during the early stages of the illness.
     
  6. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    and hey one day if proven by further research that forced activity = worsened health or even death....
    I do so look forward to Wessely, Sharpe and those other grinning smug bastards being sentenced to 15 years for Negligent Manslaughter and other crimes, mmm mmmmm!


    at start I kept trying to go on and kept getting knocked on my arse by this illness
    if someone had just TOLD the General Public to rest in after serious viral infections, well!
     
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  7. SDSue

    SDSue Southeast

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    *bolding mine

    This is fabulous. It definitely does fit with so many stories. Thanks for posting, @Dolphin!
     
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  8. roller

    roller wiggle jiggle

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    someone once said to me: "the stronger the soul is, the harder will be their fate"
     
    Last edited: Feb 9, 2016
  9. Justin30

    Justin30 Senior Member

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    Who knows with this disease. I have read so much conflicting jargen that one who comes down with this illness gets lost in how to deal with it.

    One person has flu like symptoms and is helped by antivirals.

    The next has neuro issues and cant take anything.

    The next had a mixed bag of issues then takes immunmodulators, etc.

    I guess my point is is that i here people being super sick from the start and never getting better. People who are mild then have full recoverys. People who are bedbound that after years in bed get up and lead near normal lives. People who arent that sick for years then just crash.

    What do you believe? Im confused who knows?

    I guess that im just absolutely pissed that our governments/ Drs/ insurers have just passed us by and labelled us with such a pathetic name called "chronic fatigue syndrome" and as a result we are left to try to figure this out for ourselves and hindered the chance of getting real, legitimate medical funding for years.

    At least we have eachother and can lend suppory when the people who make decisions completely ignore the likes of people like Ramsay, etc who had pinned from the get go.

    So Sad....
     
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  10. TiredSam

    TiredSam The wise nematode hibernates

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    Excellent article. Of course we need as much rest as possible as early as possible for the best chance of recovery. The trouble is that when you suggest this you walk into an absolute shitstorm from all directions.
     
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  11. SDSue

    SDSue Southeast

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    Sadly, we face the storm no matter when we finally cry “uncle” and rest. We face it if we stop early in the course of our disease, and we face the same crap if we push until we can no longer even get out of bed. Either way, we are labeled malingerers, depressed, anxious, crazy, etc.

    The problem is that it’s human nature to keep pushing. Even with all the information put before me about ME/CFS and my definitive diagnosis by one of the top ME docs, I kept pushing to total collapse. I just could not believe it could happen to me. I was different. I was smarter. I was more motivated. I was going to beat this thing. ....... I was also very, very wrong.
     
  12. Justin30

    Justin30 Senior Member

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    Sue,

    So you think if you had rested more in the beggining you would be in a better place now? Im confused or do you think it is inevitable that we deteriorate regardless what we do other than normal aging?

    I agree the stigma that goes along with CFS absolute BS. The Dr and CDC persons that labeled us as this is pathetic and the result is not one approved treatments, lack of funding, ruined lifes, hopes and ambitions, collapses of families amd the list goes on.....

    If I get well I will spew my guts out about all this. I listen and feel the pain of people on this forum and have experienced first hand the almost seemingless neglect and lack of help from Dr with regard to this illness. It angers me to the absolute core of my being...they have know about this disease since the 1930s and more so by the 1950s and what has changed? Thanks CDC, Thanks NIH, Thanks health Canada, Thanks NHS.....yeah right!!

    I will see if my top me/cfs dr can get me back to work like he said he could.
     
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  13. SDSue

    SDSue Southeast

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    That’s the million dollar question. I can only answer for myself.

    I view it like a snowball rolling downhill. If you stop the snowball at the top of the hill (ie: rest when you first get symptoms of ME), you stand a greater chance of reversing the process.

    If you let the snowball gain momentum, you can put all the stops in place and the snowball just plows them down and keeps rolling. And so it has been in my situation.

    I waited too long to stop the ME process, so my illness has continued to gain speed in spite of all the measures my doctors and I have thrown at it - total bed rest (not by choice but by lack of ability to do otherwise), addressing sleep, antivirals, thyroid meds, cortisol, dysautonomia treatments, etc etc etc.

    I know one thing: if I could do it all over again, I’d stop long before ME forced me to stop.
     
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  14. jimells

    jimells Senior Member

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    Nobody really knows, because nobody has bothered to do a decent study to find out. About the best we can say is that if a patient doesn't rest, they will certainly decline faster and have more severe symptoms.

    For patients that are able to rest (more or less), the results are all over the place: very few "recover", some improve, some don't, and some continue to slowly get worse no matter how much they rest. (I'm in the latter group)
     
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  15. Justin30

    Justin30 Senior Member

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    Im sorry to here that sue and jim. I have only had this for 8 months but my last relapse is now going on 2 months with some better moments but significant loss of functioning. House and bedbound. I do know though that I could probably push through and do more but refuse too.
     
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  16. alex3619

    alex3619 Senior Member

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    This brings back a bad memory. I had, aside from exhaustion and other symptoms, severe muscle pain. One of my fingers did not become paralyzed but I had total loss of sensation that was not restored for a very long time ... I no longer recall how long. It scared the hell out of me and had me start looking for answers, rather than just believe what doctors were telling me. This was circa 1986 or maybe early 1987.
     
    Last edited: Mar 1, 2016
  17. alex3619

    alex3619 Senior Member

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    "Bed-rest has become a lost medical recommendation, even regarded as dangerous. Hospital rehabilitation practices urge a resumption of activity as soon as possible after childbirth, operations, including amputations, and recovery from infectious diseases."

    One of the things that scares doctors is after surgery is blood clots. It can lead to massive damage or sudden death. So they like to get people moving, though they also use blood thinners. THIS is the main ground for getting patients moving, though I could see reason for some post stroke patients and many orthopedic patients to start moving as soon as possible.

    Yet this is only short term. Its not long term. I wonder though if this is sending the wrong message to the more zealous pro-exercise community.

    Exercise is generally good, to a point. Its not equally good in all healthy people Its definitely not good for everyone, all the time. I think the disbelief in ME, despite verifying technology from 1940 onward, is also contributing to this.
     
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  18. ukxmrv

    ukxmrv Senior Member

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    Dr Ramsay did know about ME patients

    "However, this is largely dependent on the management of the patient in the early stages of the illness. Those who are given complete rest from the onset do well and this was illustrated by the aforementioned three patients admitted to hospital in an unconscious state; all three recovered completely.

    Those whose circumstances make adequate rest periods impossible are at a distinct disadvantage, but no effort should be spared to give them the all-essential basis for successful treatment. Since the limitations which the disease imposes vary considerably from case to case, the responsibility for determining these rests upon the patient.

    Once these are ascertained the patient is advised to fashion a pattern of living that comes well within them. Any excessive physical or mental stress is likely to precipitate a relapse."

    http://www.name-us.org/defintionspages/deframsay.htm
     
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