Video: Phil Murrays ME/CFS full recovery story & call for more research funding

Whenever I see these stories I am reminded of the WW1 song:

We're here because we're here because we're here because we're here.
We're here because we're here because we're here because we're here.

Edit to the tune of Auld lang syne

 

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).

 

PS. If anyone wants to see the 1998 Bristol hospital video that was made of me when sick (c.8 months in), there are excerpts here (less than 3 mins; poor quality from VHS). PEM is so obvious. It makes me shiver to think that this was a few months BEFORE my second, re-triggering acute virus. Within 6 months I was much worse than this, & going down, and 1999 I was sick all year & had no good periods. I have been very lucky & will always acknowledge that.

https://www.youtube.com/watch?v=_vm9SqLEOcU

 

@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.

 

''cat vomit in the brain'' Love that, good description!

 

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.

"Cat vomit" - argh!! I felt SO AWFUL in my brain-fogged "poisoned" head. Bad memory but so long ago now that I am also laughing now!

 

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 i- I am overcrowded right now, but try twitter maybe? https://twitter.com/PhilM64

 

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.

 

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.

(*) which gradually increased, year by year, as I was (super lucky enough to) improve.

 

Hey Phil,

Nice to see you here and sharing your recovery, and congrats on your improvement.

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.

My story here if you're interested. I was also vaccinated x4 over that 6 month window which might have made the difference between recovering. Who knows.

 

My symptoms did not improve after constant viral reactivations, it actually brought me down further and I started experiencing orthostatic impairment which made me more disabled.

 

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).

10 years? Wow, mine was about 10 days after the initial acute illness/virus...... & 6 weeks in, it was so severe I was bedridden & if I got up, i triggered another PEM attack which sent me back to bed, with crushing brain fog etc (not pleasant). 10 years later I was fairly well again. So many different stories / experiences.....

 

Very pleased about your recovery @phil_in_bristol, and thanks for talking openly about it and sharing. I'm in my 8th year and have made great progress with pacing, although my progress seems to have reached a plateau which is nowhere near recovery but I manage to feel well most of the time. I certainly consider myself one of the lucky ones.

I really like recovery stories, it happens, and they give me hope. It was a recovery story which put me on the path to disciplined pacing which fortunately has allowed me to make the best of my situation (which I take no credit for, I was lucky that pacing led to some improvement for me). But I'm afraid I haven't been able to watch the video because I find Liz so annoying. I can't help feeling it's a shame that you associated with her, her website is full of woo, toxic positivity, and people who take credit for their own recovery and set themselves up as CFS Recovery Coaches offering holistic NLP transformational teaching etc etc. I like to imagine that if I ever recover I'll only allow myself to be interviewed by a grumpy pessimist, and I'll be wearing a T-shirt with "Fuck Inspiration" splashed across the front of it. But that's just me.

Hats off to you anyway, I hope your good health continues.

 

Thanks Sam, I did ask Liz about her motives, and they seemed sound, and I did ask specifically if she might use my story to "push" for anything / any "treatments" etc, and she said she wouldn't. So far she has been 100% OK with that; it's simply a recovery story with my experiences which (I'm glad to say) a lot of pwME have said have helped them, even if only helped them get perspective on their own illness./ situation eg. mothers struggling at home with young children.

I'm sure some people will find Liz's style annoying..... super optimistic & yeah, I know, which is why I made DOUBLY sure that i emphasised that my "turning point" basically came when I "gave in to it". I still do that to positive types today, occasionally, by telling them I gave up. They just have to accept it - you can't beat ME/cfs by fighting the "good fight". Well, I certainly couldnt', i just got much worse......

I now work at Decode ME, having left the CMRC PAG last month after 4½ years, and i never go around beaming at pwME saying inspirational recovery stuff. That's not my way, or the way. This illness is hard, long-term, & serious. There are no short cuts...... (if only).

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.

 

I am absolutely hopeless at pacing, I just can't relax, I don't think my mental health could cope with long periods of resting. I use 'switching' more, but admit I push myself to do too much physical activity on a daily basis. I have pets that need looking after, they use too much of my energy but the trade off is they are the best natural anti-depressants going and mine are highly entertaining and make me laugh every day.

Edited 555 times for typos and bfog cock ups!