Hi all - yes I'm on here but not usually active. Thanks for watching the video - appreciated. Adrian's point is interesting - one thing I didn't mention was that one year in (late 1998), I caught another savage (throat) virus and i went VERY downhill immediately, and it cost me (I think) 2½ years more, taking me to 3½ years really ill with PEM and brain fog, poisoned, digestive issues, temperature & heart irregulation, sleep disturbances, light & noise intolerances etc. Plus of course terrible fatigue. I was aware i was getting close to that 5-year "tipping point", but as my "two onsets" had been clearly post-viral, I still maybe had a chance. I reckon had i NOT caught the second virus, I *may* have been unwell 1½-2½ years total in all. But it happened...... i make no secret of the fact that I believe my own "version" / "subgroup" of ME/cfs was very definitely postviral fatigue syndrome. Many have this mildly. I had it very badly, taking me into moderate ME/cfs and years of mild ME/cfs (ICC criteria).I think one of the really interesting things about Phil's story is he seemed to recover after a long time of being ill which seems really unusual whereas I think many of the recovery stories are people who have been ill for a relatively short time (as in a few years).
I think he knows he is one of the lucky ones which is why he has been trying to do things to help the community.
Thank you very much! I have had three infections in the past 10 years that led to 2-3 months' illness, some felt a bit like PVFS but also chronic sinusitis. Some forced me back to no-exercise, but I'm super lucky that they all proved short lived & i was back to normal. I do fear viruses but having been OK for so long I just lead my life & am grateful, and accept that possibly one day I could fall proper ill again.@phil_in_bristol I'm so very happy for you, I hope and pray that no further infections or life events ever cause you to relapse. Bless you for all you are doing/have done to help pwme, it's very much appreciated.![]()
Hi all - yes I'm on here but not usually active. Thanks for watching the video - appreciated. Adrian's point is interesting - one thing I didn't mention was that one year in (late 1998), I caught another savage (throat) virus and i went VERY downhill immediately, and it cost me (I think) 2½ years more, taking me to 3½ years really ill with PEM and brain fog, poisoned, digestive issues, temperature & heart irregulation, sleep disturbances, light & noise intolerances etc. Plus of course terrible fatigue. I was aware i was getting close to that 5-year "tipping point", but as my "two onsets" had been clearly post-viral, I still maybe had a chance. I reckon had i NOT caught the second virus, I *may* have been unwell 1½-2½ years total in all. But it happened...... i make no secret of the fact that I believe my own "version" / "subgroup" of ME/cfs was very definitely postviral fatigue syndrome. Many have this mildly. I had it very badly, taking me into moderate ME/cfs and years of mild ME/cfs (ICC criteria).
I do wonder if there is value in studying people with ME when they get further infections as some report a reduction in symptoms. You are making another interesting point about basically an additional post viral fatigue on top of the original one. I think there are also stories around vaccines having an effect (even short term) and this has been reported with long covid. It does make me wonder if a study could basically follow patients and when they get a virus do additional testing and look at the change in health.
hi i- I am overcrowded right now, but try twitter maybe? https://twitter.com/PhilM64@phil_in_bristol is it possible to contact you. I tried a PM and it did not work. Thanks. Perhaps you are overloaded and overcrowded now what with the video having come out. Thanks in advance.
I agree. Sadly it all comes down to insufficient resources / funding for research. Not only am I 100% well nearly all the time, I actually know *exactly* how to make myself ill with CFS symptoms again (answer: climbing 3000m+ mountains when not acclimatised - it always makes me very ill, for up to 2 weeks, and so I've given up this "hobby"). No one has the budget to study the physiological changes that clearly occur in me when this happens. A month later, I would be back to normal (so my system must eventually "reset"). Yes I'd do this for ME/cfs research, but no, no one will study/fund this.Most definitely. @phil_in_bristol should be included in the genetic research, it would be fascinating to compare the genes of people with 'active' ME and those who have recovered/ are in remission.
Hi, thanks - just catching up here whilst "working" from home..... yes, my onset (both of them, a year apart ) was absolutely viral. Raging sore throats. And =- PEM - no, I was not able to avoid PEM. My PEM was utterly appalling. In 1999 I got PEM all the time, without doing anything. After that I had a small boundary (*), and so avoided PEM if within that boundary, but again, many many more "crashes" when I did (inevitably) exceed the boundary. See my 2:45 video on Youtube for (literally) graphic evidence of my PEM.I would love it if Phil joined in our thread here.
I also improved earlier on in the illness and was able to do more, but I hit a wall 18 years ago and can not increase anymore. If I stay within my 'energy boundary' I won't experience PEM.
It would be interesting to know why Phil was able to surpass that limit w/o experiencing PEM.
Was his onset viral?
I do wonder if there is value in studying people with ME when they get further infections as some report a reduction in symptoms. You are making another interesting point about basically an additional post viral fatigue on top of the original one.
Hi - yes, PEM was always starting 24-48 hours after the over-"exertion". ..... rarely inside 24 hours i think. (and after starting, the "crash" would last anything from 2-3 days to 2 weeks; typically 5 days IIRC).Did you experience delayed PEM? What I would describe as immediate PEM would always involve either environment(allergies) or immunological issues (viral) My PEM has always been delayed, 13-16 hours after over exerting myself beyond my 'energy window'.
I didn't experience PEM until 10 years after my sudden viral onset.
Hats off to you anyway, I hope your good health continues.
Re. Pacing - very glad it's helped you; I still extoll its virtues 12 years after I was able to stop it due to recovery. FYI, I "plateaued" a couple of times, once for about 2 years - & assumed that was "it". Luckily I did eventually go from 80% ... to 90-95% ... and finally, it seems 100% (but never say never.... I *could* be one virus away from re-triggering). If you feel well most of the time, that's v promising. I remember saying when I was at 80% that "it's now up to me whether I get PEM or not - not the illness" (ie. my activity levels).
It's a good interview! It gives me hope that recovery after long time illness is still possible, most other stories I know were pwME that recovered within 2yrs.
What I find hard to impossible to cope with when it comes to pacing is my mental health. I "trade" pyhsical for mental well being at times and I'm not good at pacing with cognitive stimuli, e.g. audio books.
I sometimes wondered if the plug was pulled completely, e.g. being put into induced coma for some time, would lead to improvement.