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

Discussion in 'General ME/CFS News' started by Sly Saint, Sep 4, 2021.

  1. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    "Phil Murray had M.E. / Chronic Fatigue Syndrome for 8 years in his 30's. He's now living an active life in his 50's, running & rock climbing.
    Chat starts: 0:24 Interview starts: 0:48. He shares powerful & practical recovery insights and his passion for biomedical research. TIMESTAMPS: Overview: Phil was a 33 year with a rising finance career and an active sporting and social life. Then a viral illness knocked him down. Within 6 weeks, he became disabled by the effects of post-viral syndrome. For the first 3 years, he was mostly house-bound. Post-exertional crashes would leave him fully bed-bound. Here is his full recovery story and why he's still involved with this illness working to advance research funding. "

    Code:
    https://www.youtube.com/watch?v=2Tu_4zcBLqY
     
  2. Kalliope

    Kalliope Senior Member (Voting Rights)

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    The video is shared by a YouTube Channel called "Heal with Liz". There's a link to her website which looks similar to what Recovery Norge is doing. Seems she had a full recovery with the help of the Dynamic Neural Retraining System (DNRS) as it , in her words, "healed my fight-or-flight system". She offers her services.

    There's also a list of "CFS Health Coaches" on the website, including an LP practitioner.

    Here's the website:
    https://healwithliz.com

    Edited for clarity.
     
    Last edited: Sep 5, 2021
  3. chrisb

    chrisb Senior Member (Voting Rights)

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    how did we guess...?
     
    Tia, MEMarge, Invisible Woman and 6 others like this.
  4. InitialConditions

    InitialConditions Senior Member (Voting Rights)

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    I would thoroughly recommend this video. I know Phil, as others here do. He has been involved with M.E advocacy for many years—first with Westcare and then Action For ME, as well as the CMRC PAG, and now has a role with DecodeME.

    He had M.E and recovered over many, many years with strict pacing. He is very honest about how fortunate he has been, and how his circumstances probably helped him recover. He was cautious about doing this video with Liz as he'd seen some of the other material and 'framing' on the website, but he thought it was worthwhile putting this viewpoint over and sharing his story.
     
    Last edited: Sep 4, 2021
    ahimsa, Cheshire, Simon M and 25 others like this.
  5. Mij

    Mij Senior Member (Voting Rights)

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    I have no one doubt he recovered. It's encouraging to read stories about people who suffered and recovered.

    The thing with ME is that you can go into remission. We can pace and rest for 30 years and still have ME once we start being fully active again. Pacing and resting doesn't prevent or cure ME, the same as it doesn't cure people with MS.
    You either have it or you don't.
     
  6. Mithriel

    Mithriel Senior Member (Voting Rights)

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    People with MS can go for decades without a flare then be suddenly badly affected. I very much doubt that ME is cured in the sense that we would be able to take up marathon running.

    Some people who had EBV originally are very ill for some years and then recover but it is debatable if that was ME or a prolonged recovery from EBV. From stories on the forums and other places, it is people in that category who go on to climb mountains.

    It is good news that remission is possible - I improved a lot from my early 40s until life forced me to live on the edge of what is possible for me - but cure is not a good word to use for us, as it is not for most chronic diseases.
     
  7. Fizzlou

    Fizzlou Established Member (Voting Rights)

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    Very encouraging and I like how Phil humbly communicated this. I avoid most recovery stories.

    Interesting point about prioritising feeling better…he explains it well and as simple and as obvious as it sounds I haven’t really grasped that. We tend to measure improvement more by what we do. Thanks, food for thought.
     
    Jan, phil_in_bristol, Tia and 13 others like this.
  8. InitialConditions

    InitialConditions Senior Member (Voting Rights)

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    That's not what he said. You are mishearing 'improved' as 'increased'. The exact quote is: "over many many many months I improved slightly, and when I improved slightly I just felt better for longer...".

    He then goes on to say: "I must stress here: I didn't feel better because I was doing more. I was doing more because I felt better."
     
    ahimsa, Chezboo, Simon M and 27 others like this.
  9. Mij

    Mij Senior Member (Voting Rights)

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    Thanks for the correction. That was my experience too.
     
  10. Barry

    Barry Senior Member (Voting Rights)

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    That last sentence clarifies completely that Phil was not doing GET or any derivative of it. As I understand it GET urges you to not give in to your symptoms but to push through them. It sounds like that in this case sensible pacing led to a virtuous circle, over time. Or that he was going to improve anyway.
     
  11. Mij

    Mij Senior Member (Voting Rights)

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    Yes, my misinterpretation was that doing more made him feel better, so he was able to do more.

    I was able to do more early in the illness over time naturally, but when I went over my 'limits' is when I started experiencing PEM despite how well I felt when I recovered from PEM a few days later.

    It's complicated.
     
  12. Perrier

    Perrier Senior Member (Voting Rights)

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    I watched this video. And I worry that people who are very severe, and who do rest non stop for they can't do much, will feel like failures that they have not recovered. Mr Murray is a lovely fellow and I'd love to chat with him. If anyone knows how to reach him, please let me know. He does say how lucky he is, and how others are severe. I am not criticising him. He is one of the lucky ones. However, the illness he seemed to have/has is really mild/moderate compared to those who are severe. He never talks of OI, of the inability to eat, food intolerances, of headaches, flu feeling, toxic feeling, poisoned feeling. The focus is on fatigue and being tired. What I have watched here at home is someone who never has even one minute feeling 'normal.' I used to ask my daughter, do you ever have a few minutes where you feel normal, like before you became ill. She says there are always symptoms, sometimes on a lower level, sometimes on a very high level, but she is never without some symptom, and she says this is unbearable. And she is not pushing, or abusing herself. And she has given in too. I can only conclude that things must be more dire in her system and that of all the folks we know who have not recovered. I would certainly love to know what more to do to bring about recovery. I would do anything to help her.
     
    Last edited: Sep 5, 2021
    Chezboo, Amw66, Tobedyl and 22 others like this.
  13. dave30th

    dave30th Senior Member (Voting Rights)

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    Phil is a very decent, thoughtful guy who has never as far as I have seen tried to do any more than describe his own experience. He does not try to extrapolate it to others or tell others what to do--but offers his own experience as a pathway he managed to be lucky enough to navigate. I haven't watched the video but my impression from our interaction is more that he feels like he's in long-term remission rather than "recovered," but maybe I'm wrong about that.
     
  14. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    he's a member
    @phil_in_bristol
     
  15. Adrian

    Adrian Administrator Staff Member

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    I think that quote really gets at one of the issues with recovery stories (not Phil's) which is people often credit what they were doing at the time with improvement and also doing more with improving when the relationship is the otherway around. Having observed someone with ME over the years both improve and get worse (although within quite limited bounds) I would say improvement seems to come and then activity. However, worsening is often associated with over activity (which can, depending on health, be quite slight over activity). I also observed a desire to try things to improve on some initial improvement and then some credit given to them!

    Ultimately this is why proper research and strong methodology is required and not a reliance on stories.
     
  16. Adrian

    Adrian Administrator Staff Member

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    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.
     
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  17. Perrier

    Perrier Senior Member (Voting Rights)

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    Your point is well taken--we rarely hear such strong recovery stories from folks who have endured this catastrophe for a decade or more. It is encouraging certainly, very encouraging. But some of the ill I know try so hard, so very hard, and what I hear, say from my daughter for example is: 'what am I doing wrong? I try so hard, and I am not getting better. I feel like I just keep failing.'

    Perhaps, the process Phil went through ought to be more closely examined by specialists. Perhaps it will point to the system in the body that is disturbed. I don't know. But this illness is truly a Golgotha. ( If anyone saw Whitney's last post, and his photo--my heart just broke into a million pieces looking into his eyes--a look he has that I see in so many young people with this hell.)
     
    Last edited: Sep 5, 2021
  18. Trish

    Trish Moderator Staff Member

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    I don't think it's about the few who recover getting something right and the rest of us getting something wrong. Pacing is simply managing our activity and rests, within the constraints of real life, in order to try to reduce episodes of PEM, and in doing so reduce the chances of an episode of PEM turning out to be the start of long term worsening.

    We can only hope that by trying not to trigger relapses through over activity we enable our bodies to have whatever slim chance there is of improvement, but for many of us it's more about trying to stay stable or slow down worsening.

    Nobody knows why a few are lucky and experience remission. So logically, no credit or blame should attach to any individual when improvement or worsening happens. But we're all human, and we all want to get better, so it's natural to feel all sorts of illogical things when we stay sick. Not helped by the BPS narrative.

    It would be intersting to do long term studies on symptoms and activity for a very large sample over many years to see whether it shows anything
     
  19. Mij

    Mij Senior Member (Voting Rights)

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    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?
     
  20. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    I understand Phil is being careful and responsible in reporting his experience.

    My knee jerk reaction to improvement stories is nothing to do with Phil or his experience. He has every right to speak about his own experience and I'm sure many will find that helpful and hopeful.

    I don't - & that is certainly no fault or failing of Phil's.

    My problem is the vast majority of recounted experiences I have read of ME patients over the years were ones of improvement painted as recovery, or where improvements were unhelpfully attributed to things where there is no supporting evidence etc. Or the ones that paint the "nearly everyone improves with time" narrative.

    I would rather have had a realistic idea of what I was facing from the get go. With the knowledge that sometimes, no matter how well I manage it, sometimes things will still get worse. Occasionally they may improve a bit but probably not permanently.

    I feel the cumulative weight of stories about our experience is unbalanced & that also gives a false impression to the outside world. Most people who don't have experience of severe chronic illness will equate remission with spontaneous recovery. There seems to be an inherent belief that if you can spontaneously recover the chances are you weren't thay sick.

    So few of us spontaneously go into remission - a remission that gets us back to a semblance of a life- that this feeds in to the image that it's not so debilitating, not so serious and that most people recover in time.

    Having said all that I do appreciate Phil's efforts. He could wash his hands of the whole thing and spend his time and energy on something else entirely. Who could blame him? He is raising awareness and it's not his fault that the severely ill aren't always well enough to tell their story & even if they were I'm not sure many outside our community are interested in listening.
     

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