4 ms·

What's the trick to getting better? I have a milder version. I am considering a clinic that uses a graded exercise programme, because at the moment I am too sca

What's the trick to getting better? I have a milder version. I am considering a clinic that uses a graded exercise programme, because at the moment I am too scared to exercise but I know I need to. I had Epstein Barr in a blood test a while back but so does 90% of the population IIRC. Do you need a specific mono test?

mikelevins 8y ago
As far as I know, there's no trick. I've gotten better, but I don't know how or why. In case it offers anything useful, I'll just say what I did: After I was initially diagnosed, I used modafinil for several years to give me a predictable portion of each day in which I was awake and alert. After a couple of years of that, my symptoms gradually abated, and I began, very slowly and carefully, to add some gentle exercise back into my routine. (Before the illness, I had been sort of an exercise fanatic, and I really missed it.) The boundary on exercise was that I had to strictly avoid getting winded or fatigued, so my exercise regimen was extremely mild at first. Very slowly and gradually I built up stamina, until, after a year or two, I was up to a couple miles of walking each day. I tried various other kinds of exercise, but most of them tempted me to overexert, and when I overexerted, I went backward. It's now fourteen years after my initial diagnosis. I still have the syndrome--I can push myself into being symptomatic if I'm not careful--but I've learned some boundaries, and if I stay within them, I have a pretty normal, comfortable life. Nowadays I walk three to five miles a day, mostly around a nearby lake with my dog. Pretty good outcome!
MRD85 8y ago
I don't know if there is a known trick. I simply waited it out and I slowly got better. There is a specific EBV test that tests for recent infection, as opposed to the other test that tests for any infection ever.
cpncrunch 8y ago
Fred Friedberg's protocol seems to be the best option: https://onlinelibrary.wiley.com/doi/abs/10.1002/jclp.20676 https://onlinelibrary.wiley.com/doi/abs/10.1002/jclp.20676 (look up the paper on sci-hub if you don't have journal access).
- mindgonehaywire 8y ago
  Fred Friedberg's protocol pushed a friend of mine into Severe ME and that person spent years in a nursing home as a result. At this point we know enough about Ramsay's observations on muscle fatiguability to know that anything involving exercise is absolutely contraindicated in this illness. What you are doing is irresponsible and dangerous. ME patients cannot tolerate exercise. Period, end of story.
  - cpncrunch 8y ago
    What, specifically, did your friend do?
    - mindgonehaywire 8y ago
      What this person did, specifically, was listen to someone like you, and went out to Stony Brook, & FF and his protocol ruined what was left of this person's life. Instead of going to see an ME-knowledgeable doctor who possessed an understanding of what Melvin Ramsay had discovered decades earlier. You and your misinformation are dangerous, and it's not like you haven't been told, but you don't care. It's really too bad you can't held accountable for the damage you do.
      - quickthrower2 8y ago
        I'd like to know more. Does this accurately reflect the protocol your friend had to follow: http://www.cfidsselfhelp.org/library/fred-friedberg%2525E2%252580%252599s-seven-step-protocol-treating-cfs-fm http://www.cfidsselfhelp.org/library/fred-friedberg%2525E2%2... Or was there something extra, you mention exercise in your other comment for example which isn't mentioned in the article above. I don't have access to the original journal.
  - adinb 8y ago
    Which makes sense in light of the recent research implying crippled metabolomics in mitochondria (altered/less efficient ATP production chain)
adinb 8y ago
Try adaptive pacing instead of GET, you’ll get much better results. Read Tom Kindlon, et al’s work on debunking GET. I can provide links, to papers etc if anyone wants them. Side note: I have had ME/CFS since 2003, (partially bed bound and mostly housebound, raising 3 kids with my wife who now is also diagnosed) when it knocked me out of my USAF Reservist and my systems engineering careers. I helped admin PhoenixRising.me (a charity & forums for ME/CFS patients and allies) for many years. If anyone has any questions about ME/CFS (aka SEIDs) or coping with it, feel free to ask. Edit: Please follow and read some Jen Brea’s work on twitter: https://twitter.com/jenbrea/ https://twitter.com/jenbrea/ and please try to watch (Sundance award winning!) “unrest” by @jenbrea .
- quickthrower2 8y ago
  What about for 'mild' CFS though. Not bed bound by a long shot, but strong enough to dampen life - for me going to work is the main thing and I try to do little else. But I can do 40 hours a week plus help out a bit a home and that is quite maintainable IMO, but if I did 40 hours a week plus look after kids plus some exercise I think I would be fucked. Last time I started going to the gym again - boom - the flu symptoms come back after 3 sessions. Not really going hard.
- mindgonehaywire 8y ago
  Agree 100%.

mikelevins 8y ago

As far as I know, there's no trick. I've gotten better, but I don't know how or why. In case it offers anything useful, I'll just say what I did: After I was initially diagnosed, I used modafinil for several years to give me a predictable portion of each day in which I was awake and alert. After a couple of years of that, my symptoms gradually abated, and I began, very slowly and carefully, to add some gentle exercise back into my routine. (Before the illness, I had been sort of an exercise fanatic, and I really missed it.) The boundary on exercise was that I had to strictly avoid getting winded or fatigued, so my exercise regimen was extremely mild at first. Very slowly and gradually I built up stamina, until, after a year or two, I was up to a couple miles of walking each day. I tried various other kinds of exercise, but most of them tempted me to overexert, and when I overexerted, I went backward. It's now fourteen years after my initial diagnosis. I still have the syndrome--I can push myself into being symptomatic if I'm not careful--but I've learned some boundaries, and if I stay within them, I have a pretty normal, comfortable life. Nowadays I walk three to five miles a day, mostly around a nearby lake with my dog. Pretty good outcome!

MRD85 8y ago

I don't know if there is a known trick. I simply waited it out and I slowly got better. There is a specific EBV test that tests for recent infection, as opposed to the other test that tests for any infection ever.

cpncrunch 8y ago

Fred Friedberg's protocol seems to be the best option: https://onlinelibrary.wiley.com/doi/abs/10.1002/jclp.20676 https://onlinelibrary.wiley.com/doi/abs/10.1002/jclp.20676 (look up the paper on sci-hub if you don't have journal access).

mindgonehaywire 8y ago
Fred Friedberg's protocol pushed a friend of mine into Severe ME and that person spent years in a nursing home as a result. At this point we know enough about Ramsay's observations on muscle fatiguability to know that anything involving exercise is absolutely contraindicated in this illness. What you are doing is irresponsible and dangerous. ME patients cannot tolerate exercise. Period, end of story.
- cpncrunch 8y ago
  What, specifically, did your friend do?
  - mindgonehaywire 8y ago
    What this person did, specifically, was listen to someone like you, and went out to Stony Brook, & FF and his protocol ruined what was left of this person's life. Instead of going to see an ME-knowledgeable doctor who possessed an understanding of what Melvin Ramsay had discovered decades earlier. You and your misinformation are dangerous, and it's not like you haven't been told, but you don't care. It's really too bad you can't held accountable for the damage you do.
    - quickthrower2 8y ago
      I'd like to know more. Does this accurately reflect the protocol your friend had to follow: http://www.cfidsselfhelp.org/library/fred-friedberg%2525E2%252580%252599s-seven-step-protocol-treating-cfs-fm http://www.cfidsselfhelp.org/library/fred-friedberg%2525E2%2... Or was there something extra, you mention exercise in your other comment for example which isn't mentioned in the article above. I don't have access to the original journal.
- adinb 8y ago
  Which makes sense in light of the recent research implying crippled metabolomics in mitochondria (altered/less efficient ATP production chain)

adinb 8y ago

Try adaptive pacing instead of GET, you’ll get much better results. Read Tom Kindlon, et al’s work on debunking GET. I can provide links, to papers etc if anyone wants them. Side note: I have had ME/CFS since 2003, (partially bed bound and mostly housebound, raising 3 kids with my wife who now is also diagnosed) when it knocked me out of my USAF Reservist and my systems engineering careers. I helped admin PhoenixRising.me (a charity & forums for ME/CFS patients and allies) for many years. If anyone has any questions about ME/CFS (aka SEIDs) or coping with it, feel free to ask. Edit: Please follow and read some Jen Brea’s work on twitter: https://twitter.com/jenbrea/ https://twitter.com/jenbrea/ and please try to watch (Sundance award winning!) “unrest” by @jenbrea .

quickthrower2 8y ago
What about for 'mild' CFS though. Not bed bound by a long shot, but strong enough to dampen life - for me going to work is the main thing and I try to do little else. But I can do 40 hours a week plus help out a bit a home and that is quite maintainable IMO, but if I did 40 hours a week plus look after kids plus some exercise I think I would be fucked. Last time I started going to the gym again - boom - the flu symptoms come back after 3 sessions. Not really going hard.
mindgonehaywire 8y ago
Agree 100%.