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"Lost in Translation - The ME-Polio Connection and the Dangers of Exercise" (February 2016)

Dolphin

Senior Member
Messages
17,567
Evidence of Supportive Effects of Bed-Rest

However, a 2003 NASA review of research papers which included information about recovery from the effects of bed-rest induced deconditioning notes that many physiological measurements are not affected at all, most that are affected recover within a few days, some take a few weeks, and only a very few minor changes in immune responses take as long as six months to recover, even when bed rest has been protracted for as long as two months.

The article also affirms:
“Prolonged assumption of the horizontal body position reduces musculo-skeletal and orthostatic stress, facilitates cerebral perfusion, and usually lowers total body energy utilization in the sick and injured so that metabolic reserves utilized for maintaining upright posture and muscular activity can be directed to those needed by the immune system for recovery.” [29]

Yet guidelines for the treatment of ME/CFS warn against excessive rest, and describe the goal of treatment to be an increase in activity.[12)
 

Dolphin

Senior Member
Messages
17,567
These effects are proportionate in intensity and duration. In the course of a day, a bit too much normal activity around the house can very quickly lead to mental confusion, which half an hour of lying down will dispel. After a few weeks of riding my bike, (following advice which I knew I shouldn’t have), the initial, exercise-induced euphoria was replaced by a relapse which took a year of rest to overcome.

Tragically, the story of many, if not most of the severely or very severely ill is of a strong- willed individual determined to fight through their symptoms, often having been given well- intentioned advice to exercise, but too often having been told that their financial support requires them to cooperate with a programme of Cognitive Behaviour Therapy and Graded Exercise Therapy, whose initial moderate illness transformed into a state of constant, intractable pain, complete incapacity, and, I only recently learned, intermittent paralysis.[5, 6, 7]
 

Old Bones

Senior Member
Messages
808
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.
 

SilverbladeTE

Senior Member
Messages
3,043
Location
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!
 

SDSue

Southeast
Messages
1,066
.....The question cannot be answered with great confidence, but my impression is that often those who continue physical activity after the symptoms begin either are relatively insensitive to pain or have more than the average courage or incentive to continue work or play in spite of illness. There is certainly no doubt that many of those most severely crippled have a remarkable strength of character and great powers of endurance.”

The description of the character of those “most severely crippled” sounds to me like a description of so, so many of our severely ill patients. ME/CFS punishes the strongest, most determined among us...you can read it in every Facebook group...and in [5].
*bolding mine

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

Justin30

Senior Member
Messages
1,065
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....
 

SDSue

Southeast
Messages
1,066
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.
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.
 

Justin30

Senior Member
Messages
1,065
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.
 

SDSue

Southeast
Messages
1,066
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?
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.
 

jimells

Senior Member
Messages
2,009
Location
northern Maine
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?

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)
 

Justin30

Senior Member
Messages
1,065
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.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
I only recently learned, intermittent paralysis

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.
 
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alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
"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.
 

ukxmrv

Senior Member
Messages
4,413
Location
London
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