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

The issue for those who only find PEM disappearing whilst bedbound unfortunately brings other problems in the body. So from
my observation my daughter needs to walk around a little in the house when she can, yes with PEM, in order not to aggravate other problems— back ache, neck pain, leg pain etc. I just don’t know how to help with this hell!

 

It's like walking a tight-rope isn't? You're damned if you move about and damned if you don't!

 

Yes! I have more and more hip and shoulder pain from being in bed, so I do need to get up and move to alleviate that for a little. To find myself more in bed due to PEM afterwards.

It's like a mobile (that thing over a baby's crib) - you move one part a little and all the rest that's connected follows and everything is crooked. It's hard to balance all of it out and I feel I'm getting worse at it over the years. The rest of my body as well as my mind have taken a toll.

 

Yes, living with ME is very hard on the body. I had to have surgery on my spine recently, I believe it was caused by slouching, trying too hard to remain in a sitting position when I'm so exhausted I should be lying flat. If only they realised that many of our symptoms and other health issues may be a consequence of us trying too hard, they have it completly back to front thinking we don't try.

 

Me too.

When your function level drops to a certain point there are times when it's mental vs physical health. I don't think that's a luxury, it's a necessity.

When you're in pain and living under such imposed restrictions with most of your usual outlets for stress relief, fun and relaxation closed to you then looking after your mental health is an important necessity. It's not an indulgence.

From what I've seen of many ME patients, including many of the people on here, psychiatry could learn a lot about mental resilience from pwME.

It seems ironic sometimes, like they are trying to get patients to fit some arbitrary mould of what "normal" should be by altering the way patients think, assuming "normal" health will follow.

This assumes that you can't top "normal" when it comes to mental health. But if that "normal" has never been tested then it's just the appearance of "normal" which is very far from the same thing.

I have been told more than once that a key factor to developing ME is an inability to cope with life, a lack of resilience. Ironic. PwME are some of the most resilient I have ever met even when they can't stand or sit upright.

 

I've been on the other side, caring for someone else and left feeling like I had to hide it when I wasn't feeling well. I have had the "well, you're lucky, you'll get over it" attitude when I needed to rest because I was blinded by a migraine having been up most of the night looking after the very person who said it.

I don't want IM to ever feel like he has to hide it if he feels ill, angry or upset. He might have to do more to help me than we ever expected but he's still my partner and he's human so he still needs support and care at times. He does get short shrift if he doesn't tell me or look after himself & rest when he's ill though.

I won't waste sympathy on someone with a head cold who isn't supportive & kind to others who are ill though.

 

Agree with you about supporting someone who supports you. I was thinking of my narc sister who went on and on about her flu after we hadn't seen each other for 20 years and expected me to make her breakfast.

 

your sister sounds like my sister!

 

This is also happening on the LC sites, lots of recovery stories, i have got much worse since LC

 

Nice interview and I appreciate the way he is communicating his story. Also good to see him involved in DecodeME.

As we know, anecdotes may have vast significant differences, the timeline, on-set, to some extent also dynamics of disease, and other things. It may vary a great deal, and some might follow quite similar pattern to Phils, but with a opposite trajectory. So caution and humilty are required. And that’s taken care of here.

I like the fact that Phil is acknowledging luck as a factor in this “unsolvable” equation. Unfortunately luck and randomness are major factors, and unfortunately ME-patients are often on the bad side of luck. It should not be like that if knowledge was way better within the medical community, but it’s bad and then luck suddenly is a big factor. Cause most patients don’t get the advice that Phil did from the Bristol charity and its competent advisors. Good advice may come early on if extremely lucky (maybe a better chance these days than 20 years ago? Or maybe not.), after some time, as here, or “never”, as the majority of patients experience. The sooner, the better. For sure. In this case after 2,5 years if I remember it correctly.

What I find most encouraging on a general level, what people in power and positions really should take from this, is the “I got better when I gave in”. That’s an important point that can’t be underestimated, knowing that patients usually never get there, when trying and failing over and over again, when doing what society and medicine expects from every patient, but works so bad when ME.

I admire the level of pacing that Phil did, cause as many are aware of, pacing the right way is really hard. So easy to do to much all the time, even on bad days, not to mention the “good” ones, doomed to overdo it big time.

Here’s a simple example from “a bad day” yesterday. Everything gets pretty skewed when ME, cause what’s a good day these days? To me, it’s just not being in constant and heavy PEM, but that is very rare. Let’s just say that the ratio good/bad these days and for very long been is extremely one-sided, in the range of 350 vs 10-15 days per year.

But yesterday. Really bad. Still I watched the video, though I knew it was not an good idea. Paid attention. Started writing a comment. Knew that was a big push through, not helpful. Usually I would still push through, yesterday I actually stopped. So I finally did the right thing. But that’s not easy. It illustrates how difficult real pacing may be. Pacing in the real sense of it, or “religiously” as described by Phil. It takes a lot to get there, cause that would mean that you “give up” everything and stares in the ceiling, just looking at some point where the sky meets the ocean. Not for one day or two, but over time. And then you get stronger. I like the quote making “resting part of my training and investing in my future”.

If only the so-called advisors could get the very basics right! Pace like “religiously” for a while early on, and you would probably see so many more improvements. Instead of the meaningless “just push through”-strategy that leads to bad prognosis in the long run.

And ten points to the important point on what to measure, not getting caught in more of one or several things necessarily means better.

Maybe time has come for not doing anything else than visualizing that the sky meets the ocean? Everything else have been tried and pushing through is obviously very damaging and dangerous.

 

Hi Peter - thanks for the positive comments about my story, & really sorry you had a rough day yesterday & used spoons on my video :-(

I did pace, and I tried to be good, but i wasn't *always* sensible, & I did pay the price numerous times. Overall tho, the only way i could accept it was the "invest in the future" angle, and recording rests as "part of my training". But as we all know, the illness isn't a constant and sometimes I'd be punished despite getting it "right"; other times I'd get away with stuff that was a bit risky. It's not a simple situation/coping strategy, but it's the best we've got (i think). I also say to people, rest & pacing comes first. You can't just take a load of supplements, have a "treatment" (eg. acupuncture), drink a super-nutritious smoothie etc & then expect to go out & have a full-on day & get away with it.

But also its important to use some energy to have some fun sometimes. Even if there's a small payback. I didn't socialise properly for about 4 years. that was tough. I did go climbing (an easy route) about 3 years in, and i paid heavily for it - a full on PEM 2-weeker crash. That wasn't sensible, however much I enjoyed it on the day (with my then-girlfriend, with whom I'd been unable to share our climbing passion with for so long).

I'm now a keen runner/orienteer & rock climber (again - as I was before my illness) (I've been mostly better for 12 years now), and these things do require a determined approach. So, when people find out I had "proper bad" ME/cfs 20 years ago, they assume I determinedly pushed through that, too, & willed my way, with "strength", to my recovery. I therefore always make doubly sure they know I did not, & that I had to give in, rest, rest more, abandon plans, "quit", etc etc.

I'm pretty sure it was one of the Westcare counsellors who advised me to try to just find a place where the sea met the sky. I've no idea who trained these counsellors, two of them had had ME themselves & recovered, and the Founder/Director Dr Richard Sykes was on the right track from day 1 (he's now long retired & in ill health/old age, I hear, sadly); he said to me in about 2000, "Michael Sharpe is a very nice chap, Phil; he's just got it completely WRONG".

I'm running the Great North Run this Sunday for an ME charity, and instead of racing it maybe i should just trot round & talk to people about how giving in helped me. OK maybe not. the GNR is one for the inspirational do-do-do'ers!

 

Hi @Perrier i read some of your messages in this thread and just wanted to share what helped / is helping me.

I think pacing when severe or very severe is very different to pacing when mild/moderate. I found a lot of the resources and/or stories, while they gave me inspiration or helped with staying positive, didn’t really apply as much to my situation. For one thing, I felt like I was resting all the time / in bed anyway, and only 1 or 2 rest periods a day was nowhere near enough.

the first time I came across something that helped me more, was the pacing schedule on this website (scroll down):

http://understandingsevereme.blogspot.com/2018/05/my-story-part-6.html?m=1


This person is currently at a more functional level than I am in terms of physical activity, so I had to adapt it to my situation.but the principles remained the same. I also discussed this with the nurse at the ME trust who also gave me a slightly different pacing plan.

Pacing plan like on the website: for every hour of “activity”, half an hour of full rest. And rest was not reading, using a phone etc. It’s full mental / emotional rest ie a body scan or a meditation. With an eye mask / in the dark, and quiet.

The first thing I did was reduce all my activity. And for activity, my least tiring activity was audiobooks. So I could do an hour of that if I wanted to. Or, I could use my phone / go online - I’d restrict that (I aimed for my 10-20 mins, then I’d listen to audiobooks for the remaining 40 minutes. But I tried not to go online like this each hour - only a few times a day, to save energy). For your daughter, this could include the small amount of walking she does, like what’s on the website.

Pacing plan which the ME trust taught me: 4 periods of “rest” everyday, same as above. But each rest period is longer, eg 1 hour. So 1 hour in the morning before lunch, one after lunch, one before dinner, one after dinner. And then in between those rest periods, plan my day so that I do small chunks of “activity” again. (For meditation I use the calm app, Jon kabat zinn’s meditations (lying down meditations, lake, and all of CD 3) and breathworks breathing meditations. I just find guided meditation easier, but sometimes I do just lie in silence doing breathing meditation.)

activity for severe ME includes everything. Including sitting up (or not) to drink water. And having the window very slightly open for light (if we tolerate light!). It doesn’t mean I have to write it down and plan it to the last detail, but as long as being mindful that those can be tiring too - and not try to cram in too much “activity”. As just eating, drinking, getting to commode/toilet/using bedpan is so hard in itself. It may be good to make a list of “activities” they can currently do.

The website talks about “switching” these small activities too.

of course sometimes (often) life gets in the way and I have to do important tasks, there are things that only I can do, but then I try to take more rest periods the next days to make up for it, and reduce activities that are more tiring.

When I last did this before hospital, I found it helped me and after a few days / a week of sticking to this, it made a difference. But everyone is different. I’m getting back on track to doing this pacing again regularly.

I hope that helps a bit

 

That link is very helpful thank you @lunarainbows

 

@lunarainbows. Thank you dear lunarainbows, thank you. It is all so difficult, isn't it. And nowhere is the emotional/mental state taken into account, and that can cause a whole lot of PEM!

 

This post has been copied to the members only In Memory forum

Very sad to hear that the founder & director of Westcare, Dr Richard Sykes, passed away yesterday age 89 in Bristol.

I talk about his amazing Charity, of course, in my interview; it's fair to say I would not be where I am today without their early intervention. And many others also benefitted.

Not sure if you can see this post, apologies if not. If I had my way, the NICE guidelines would be based around the Westcare approach! rest - pace - save energy - rest on your good days - relax properly - listen to your body - don't feel guilty for cancelling plans - none of this is your fault.

Thank you Richard, you made a difference.