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Phil’s ME/CFS recovery story & call for more research funding

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. He shares powerful & practical recovery insights and his passion for biomedical research. 

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.

One of my favorite parts of our interview, is when he talks about his volunteer work manning the phone lines for an M.E. charity. He shares heartfelt words for mums / parents with this illness who lack adequate support and feel like failures.

Whether you are new to this condition or have had it for many years, Phil shares thoughtful wisdom that is validating, practical, yet also hopeful.

Friendly reminder: Nothing is medical advice and nothing is meant to be “one-sized-fits-all.” We are just sharing our stories. Phil’s participation on my channel is independent and is not an endorsement of any content on my channel or website.

YouTube interview:

Written transcript:

[00:00:24] Liz: So how was your holiday?

[00:00:26] Phil: It was really good, thank you, yeah. Um, had some good weather and some bad weather, but lots of activities. It was good fun.

[00:00:34] Liz: Oh yeah. Where did you go?

[00:00:36] Phil: Just to the Highlands here in Scotland. Activity holiday really with orienteering and rock climbing and some hillwalking.

So lots of things I enjoy, which I wasn’t able to enjoy those for several years.

[00:00:46] Liz: Yeah. So I just want to introduce you to everyone. So Phil had myalgic encephalomyelitis also known as ME/CFS for eight years in his thirties. And he is sharing his full recovery story with us today.

He went on to have a career in finance and now works for nonprofit organizations to advance ME/CFS research. Yeah. I’m just so glad to have you here today. So what is your purpose for sharing your story?

[00:01:19] Phil: Well, there’s many reasons, really. I was very fortunate to recover to the point where I can have a normal life again, which for many years didn’t seem to be a possibility at all.

Um, and I did some things during my illness journey, which I think others might be able to benefit from, but I can’t guarantee that everyone will be able to improve as I did. 

And I also believe truly that everyone can improve their situation. However, we need a cure, which is the main thing.

And I can’t offer that. But um, I’m happy to share my story.

[00:01:53] Liz: And thank you for explaining it that way, Phil. Giving people hope that there are things they can do to improve, some may reach full recovery, but also doing the work to advance scientific research is also so important.

So I just want to take a step back. Can you explain to our audience the difference between just being chronically fatigued and myalgic encephalomyelitis, commonly referred to as Chronic Fatigue Syndrome in the states and ME/CFS in the research community?

[00:02:29] Phil: So being chronically fatigued is where you are tired nearly all of the time because you’ve been doing an enormous amount. And I’ve met many people who have claimed they have CFS because they’re tired all the time. This is not the same as ME/CFS or post-viral syndrome or Chronic Fatigue Syndrome.  

The total difference between the two is that chronic fatigue is usually brought on by doing too much.

Whereas ME/CFS is brought on by doing trivial amounts of mental or physical energy, which results in a payback or post exertional malaise, which leads you to feel not tired, but extremely ill. Very unwell, as well as exhausted. So there’s a cardinal difference.

mechs cardinal symptom

When I recovered, I went back to work and the woman said, “Oh, I had CFS. I was working 10 hour days and commuting four hours each way every day. And I was so tired, and my doctor said I had CFS.”  I said, no, you didn’t. 

I said, when I had CFS, I did one hours work, and I was in bed for five days. That’s ME/CFS.

[00:03:26] Liz: Yeah. Wow. And that four hour commute. Yeah. And I know there also is a spectrum, too. There are people who are very severe, can’t lift their head off the pillow. And there are people who are able to keep on at work, but are really struggling physically and can’t exercise whatsoever.

[00:03:47] Phil: This is very true. It’s a spectrum illness. 

I believe there’s the spectrum of severity, but there’s also a spectrum of different subgroups of the illness, which I believe are actually different phenotypes of the condition.

So they are not entirely the same. I only today I’ve read about a woman who had a very slow onset, and she got worse over many years. It was only after five or six years that she was even diagnosed properly. Whereas within six weeks, I was crippled.

[00:04:13] Liz: Yeah. Can you talk about your onset with ME/CFS, and maybe a little bit of your life before leading up, paint us a picture, and then how it struck you down.

[00:04:26] Phil: Okay, well, I was a normal 33 year old with a career and a very busy social life and very busy sporting life. I had no long-term illness issues.

I just had a very full life. I was commuting, which was not suiting me, and I was very tired, but I reject the theory that I had burnout. I wasn’t burnt out. I was just getting on with life. And I just got one savage single sore throat, which floored me completely. This is November 1997, and I took a few days off work.

And then I tried to come back to work, as you do. Within a week, I couldn’t even think properly. My brain was so fogged, and I never had this before. So I assumed I had an infection, so my doctor gave me some doxycycline. So two weeks after the onset, I was in bed, and I was absolutely ruined.

And within six weeks I was bedridden. Um, I never went back to that job, and by Christmas, I was effectively a disabled person. Um, I did try and get out and go shopping one day, uh, for Christmas. And I was in bed for three days as a result with desperate brain fog and post exertional malaise. 

And that was that, that was that.

Onset rollercoaster

00:05:34] Liz: Wow. So did your doctor have any other answers for you? They initially thought it was, I guess, bacterial because they gave you antibiotics right?

[00:05:45] Phil: Yeah, I think back in the nineties, they just dished out antiobiotics like sweeties. Yeah. I’d had a history of post viral infections in my lung, so I just assumed those kind of some kind of infection in my brain.

So I’ve never had such cloudy head before, so, but my GP, he was excellent. So many people with CFS/ME have very bad experiences with their GP’s. Many of these people seem to be female as well, which actually is a totally different [Liz raises hand]. Yeah, it’s another subject altogether, but I’ve known my GP, um, as a normal adult for many months, years before.

So many people with CFS/ME have very bad experiences with their GP’s. Many of these people seem to be female.

And he saw this transformation and he knew a little bit about what he called Chronic Fatigue Syndrome. So he sent me for every test going, and he tried me on all sorts of stuff. He referred me for things like counseling, antidepressants, homeopathy, which is available free at the time. None of them made a difference.

And six months later, he gave me a diagnosis of Chronic Fatigue Syndrome.

[00:06:38] Liz: So what were some of your key symptoms? People like to compare those. And I know of course the post-exertional neuroimmune malaise was your cardinal symptom, but can you describe, just the gamut of symptoms and your functionality levels.

[00:06:58] Phil: Okay. So as you said, my post exertional malaise was absolutely frightful.

I could not do a thing without payback, it was brutal. 

And I did actually have a haircut, during those first six months. And I spent 10 days in bed as a result. 

So every day, sometime after breakfast, my brain would fog over, and I’d feel very unwell. My heart would started racing. I try and lie down and relax and get rid of this.

And it never worked at all. And it wasn’t caused by stress because I was off work. I didn’t have any money worries. I had terrible problems with digestion. I also couldn’t tolerate sunlight, and I used to get a rash all over me. I couldn’t sleep through the night, so my sleep pattern just went crazy.

[00:07:40] Phil: I’d wake up at three in the morning and stay awake for three hours, and then I’d eventually fall back asleep. And then wake up at 10 in the morning, and feel like I had the worst of hangovers. 

So, um, I never had myalgia, I’m grateful for small mercies, but I was unable to tolerate any sort of exertion, and I couldn’t at one point speak for more than 10 minutes because I couldn’t, I couldn’t follow the words.

[00:08:02] Liz: And myalgia is muscle pain.

[00:08:05] Phil: I think I was on the very edge of the definition of ME/CFS.

[00:08:09] Liz: Yeah, there’s a lot of symptoms associated with it, the cardinal one being the post exertional malaise, but not everyone is going to have all symptoms. For instance, I didn’t have joint pain, which is like, everyone had joint pain and I did not, I was spared joint pain, my elbows.

[00:08:27] Phil: Me too,

[00:08:27] Liz: were workin good,

but I definitely had ones you mentioned, and yeah, same waking up at three, and then again at 10, and then not being refreshing sleep.

[00:08:39] Phil: Very good point un-refreshing sleep. And that’s another one that people need to know about the difference between chronic fatigue and this illness is that sleep is not refreshing and does not return you to where you should be.

You’re still ill when you wake up. 

[00:09:07] Phil: I was super lucky cause the reason I’m recovered is because I was living in Bristol and there was a charity, literally two blocks away.

It was one of the best charities in the UK at the time. They don’t actually exist anymore, but they had a team of counselors who knew all about ME, and they were literally five minutes walk from where I lived.

It was astonishing, good fortune. It was called West Care UK. Um, they were disbanded in 2004. They also a nutritionist and an OT, astonishing. And so within six months, I’d had appointments with their counselors who are not just counselors, they were ME people and they knew what to do.

And they told me to rest, and they told me to pace, and I said, “what’s pacing?” And they told me, and they had to explain it. And, it was a very tough lesson, but I learned how to pace.

[00:09:55] Liz: Yeah. So when we talked earlier, you said you initially fought it.

[00:10:01] Phil: Yeah, it was very quick. I mean, I fought it for a matter of weeks. By New Year 1998, I was fully crippled. My mother had to come shop for me and cook for me. So there’s no fighting after that. I was gone. So I, I needed to learn pacing and resting. And this was a cornerstone, I believe to my improvements and eventual recovery because I was resting every day. And initially every day was bad anyway, but then over time, some days were less bad, but the incredible lesson that they taught me was that you need to rest on your good days as well as your bad days. And of course, in the past…

 

[00:10:44] Phil: if I’d had a good day, I’d gone out and spent all my energy on that good day and then surprise, surprise the next day, days, week were utter disasters.

And I was ill and in bed everyday. So they said, “No, no, no, no. On your good days, rest as much as you do on your bad days.” And this is really tough for me because I was a sportsman and a hard worker. And I had things I wanted to do and people I wanted to see, but I did start resting on my good days religiously.

And one thing I mentioned to you in our previous chat was that if you rest on a good day, the day after is generally another good day, not always, actually, uh, can’t pretend this was easy, always, not always, but usually and you’re giving yourself the best chance. And that also means that if you rest on that second day, you’re going to get possibly a third good day.

Now it didn’t work as simply as that for me, but that did start to work over time. 

And I managed to keep these good days, and resting became part of my training. I just considered it to be investing in my future.

[00:11:45] Liz: I love that resting became part of your training and investing in your future. Yeah.

Liz: It can be tough too, because I didn’t get that advice. I got like try GET in a doctor’s note.

[00:12:08] Liz: And I was, like, well, what is this GET person going to do? Blow a whistle while I’m hobbling around my coffee table? I know you’ve done work to help change the guidelines because there was a misinformed study, there were some errors. Can you talk about the work you’ve done in the organizations you work with to change the recommendation from GET and maybe explain how that can harm people?

[00:12:35] Phil: Certainly. So the trial you’re talking about produced results, which suggested initially that GET or graded exercise therapy could be beneficial to I think they quoted 22% of people with CFS.

I think initially they claimed that sort of figure, which was actually nonsense because they had moved the goalpost during the trial. And swapped outcome measures. The trial has been fundamentally taken apart over the last seven years. I’ve observed this from a distance with approval because I couldn’t believe that there were headlines in 2011 in this country saying, exercise cures ME.

Now, everybody who knew me, my friends, my family, everyone could see that if I tried any exercise whatsoever during my illness, I got worse. I just got worse. So absolutely rejected this treatment in our guidelines, our UK national guidelines, and both the nonprofit organization I’ve worked for, and also another group that I’m in have been campaigning to ensure that the guideline changes, and they’re about to change literally this month. And they are, I believe, going to change for the better.

[00:13:45] Liz: And what changes are they going to make for recommendations on activity?

[00:13:51] Phil: I haven’t got sight of the final guideline. I believe they’re removing GET completely. And I believe only suggesting you use cognitive behavioral therapy as an addition to you know, your illness treatment, not that there is any illness treatment course because we have no cure.

[00:14:07] Liz: Yeah. But, I think there are somethings we can do to improve things. But I do want to talk a little bit more about GET. My issue with it. Is that, what is it? It’s just an acronym that you’re told, and there’s no one trained telling you what actually to do. To me, that’s doing more and more every day and that wasn’t practical, when there’s lots of factors that could influence you know, someone’s exertion tolerance, particularly if they’ve mentally exerted that day as well or something.

[00:14:42] Phil: Yeah, so GET, I, I’ve heard it all, and I’ve seen it all. Cause I got ME 24 years ago. But I heard one doctor on the radio say, oh, ME, all you do, you walk 10 paces one day 11, the next. And when you get to 200, you’re better. Um, Utter nonsense because when you get to 20 or 30 steps, you then have the post exertional malaise.

So the day after you can’t actually do any steps, and they don’t quite understand this. Um, I had another eminent UK doctor say that once you’ve got the baseline of your activity where you don’t aggrevate your symptoms, you then just increase your activities by 10% a week until you’re better.

And I found that astonishingly naive. That’s 20% off the two 40% after four, you’re going to be crashing immediately. So again, that is the bad side of GET.

[00:15:35] Liz: Yeah. And it’s great that you’re raising awareness for this because people with post viral COVID or long COVID are now being recommended. There’s basically sent to workout rooms called long COVID clinics. And they’re put on an elliptical and maybe some people who don’t have the post exertional malaise and need to build up their lung strength, that might make sense.

But, a lot of people seem to be recommended exercise as the one size fits all approach.

[00:16:09] Phil: Is that happening to you in the states as well as here? Because, you’re right, there’s not a one size fits all, and there are people with post COVID syndrome who do resemble ME/CFS, and you cannot give them advice to do more every day.

I’ve read of many people in the UK who have been told to do that by their GP’s. And they’ve got much worse, and we’re hoping that they’ll get better, but many people have stayed ill for a year as a result of trying to push through too early.

[00:16:37] Liz: I do want to specifically talk about when you say rest, I want to break it down for people because is it take a nap? Is it just go easy, is it have your friend do the dishes for you? Can you describe what you actually mean by rest? Cause I was actually told, oh yeah, just get some good rest.

I just thought that meant nine hours of sleep. So what did that look like for you?

[00:17:00] Phil: Well, when I was very ill at the start, uh, rest for me was no stimulation. 

I was not looking at the book or phone. There were no phones in those days. Thankfully. 

Um, I had to have radio off, my landline phone unplugged, and I put sort of relaxation music on, and I would lie on the sofa with my eyes shut and try and focus on nothing, which is incredibly difficult, but I couldn’t even allow my brain to think thoughts.

I couldn’t even allow my brain to think thoughts. So I didn’t lie there making plans for the rest of the day or the week or my life. I lay there trying to just imagine an ocean meeting the sky. 

And sometimes I get there. And as soon as I get there, the only thing I’d allow myself to do is sip a cup of herbal tea. That was rest. And that was a minimum of one hour every morning minimum.

Later in my journey, when I was physically a little more able, and I was mentally a little more able, but I was still very ill, a rest for my brain would be doing the washing up. I’d stand.

[00:17:58] Liz: Mmhm.

[00:17:58] Phil: I’d stand at the sink and wash up and think of nothing. And then a rest for my body would be lying on the sofa and maybe reading a magazine, and I would rest my body. 

[00:18:09] Liz: I love that. And now everyone has, the phones, and I see all the young people, they’re all like on their phones all the time. I mean, Not that I’m above anyone, but yeah, I think we can’t underestimate how much, all that activity with screens is also creates stress, or stimulation, in the neurological system.

[00:18:35] Phil: So that’s another thing about fatigue, which I’d like to just quickly mention:

Overstimulation. It was a huge problem for me. And I believe it’s a huge problem for many people with ME where you cannot switch off and your brain is wired.

And it may be wired because you’ve been looking at your phone too much, or because you’ve been talking to too many people, or maybe you’ve been watching something on your laptop or tablet, but being wired and tired and unable to sleep and get proper rest because you’re overstimulated.

And that happens a lot to me when I was ill, and it doesn’t really happen anymore. I’m very fortunate in that I actually got better, effectively better, before smart phones were really invented. So I would have found it so difficult.

[00:19:16] Liz: Yeah. I mean, you even said sometimes just having a 10 minute conversation could be too much physically and then I guess, overstimulating mentally.

How would you navigate that? Like, I don’t know, talking with a friend, would you just tell them you got to go, or can you just describe that? Like, people want to know the real life scenarios of setting boundaries and communicating your reality so you’re not overstimulating and overexerting.

[00:19:43] Phil: It was really difficult for me because I do like company, and I like talking to people, but I did get to the point where I just couldn’t talk any longer.

Phil's turning point

And my worst is 10 minutes on the telephone to somebody. And I just had to say, I can’t carry on talking like this. 

And I also had to cope with some pretty bad reactions from certain people who said that I just needed to go to bed for a week, or I just needed to relax more, or maybe I was over focusing on my symptoms, and I was being a hypochondriac, and oh, everyone gets tired and this sort of thing, and I was an athlete and all sorts of stuff before I got ill, and I know what tiredness was, and it’s not tiredness.

So yeah. I just couldn’t find the words, and I couldn’t put the words together, and I listened to people, but I didn’t hear the sentences. That was an early warning that I’d probably already gone too far.

[00:20:45] Phil: The turning point for me. I struggled with this illness for two and a half years, and I was very unwell indeed, and I was fighting it.

Even though I was resting, and blah, blah, blah, I still was fighting it. And I saw a counselor from the same organization who’d had ME himself, and he said, you’re fighting. You’re still fighting, aren’t you? And he says, you still want your life back. And I said, yeah, I’m fighting it.

And he said, stop it, just stop it. Give in, give in. And I did. So my positive action was, I gave up. 

I just decided that nothing could be any worse. I scraped the barrel. There’s nothing left to give. And I just gave in.

And instead of standing up to bad days, I just rolled over and gave in. And that was when I turned the corner.

[00:21:30] Liz: Surrendering to this terrible illness.

[00:21:34] Phil: Yeah. And that’s how I beat it.

Because then, every time it slaughtered me, I just said, fine, I’m going to lie down now. 

You can’t do anymore. I’m canceling all my plans. 

Phil on couch

And it didn’t happen overnight. It was months and months, years, but within four years I was starting to improve, properly.

[00:21:54] Liz: Wow. That’s really powerful. Thanks for sharing that Phil, that’s going to help a lot of people, who are trying to push through or even just mentally fighting it.

[00:22:04] Phil: Society wants to see people pushing through and winning. And now I’m better, I mean, I’m now back to sports again and I pushed through, and I suffer, and I win, but I’m not ill. This illness is I believe unique. 

It’s certainly very different to most illnesses in that if you push and push and try and defeat it, you just don’t get better. In fact, you get worse. 

And that is my belief. And that is why I was lucky to have this excellent counseling service near me. Um, but yeah, I did give in.

[00:22:33] Liz: Yeah. And it’s something I’ve heard from most of the recovery stories. That turning point of acceptance versus trying to fight this, and respecting your body versus trying to push through, and trying to cash in all your chips on the good days.

[00:22:52] Phil: Yeah, exactly. 

There will be days when you do spend all the chips and maybe a few more, and you will pay for it. And it’s not necessarily going to be the end of the world. For example, I had a friend’s wedding that I went to, four years in. I didn’t go to the dance afterwards, but I was there at the service and I talked to people.

Yeah, and I paid for it. I was God awful on the Monday and Tuesday, but when you’re lucky enough to be moderate, I was only moderately effected. You can do these things. 

But generally as a rule of thumb, when I was spending all my chips at the end of those months, I was worse than I had been at the beginning.

So I’d actually got worse. And that was the icing on the cake. 

That’s when I realized I had to change, and things had to change, or I was never going to get out of this. I was 36 years old and my life was over.

[00:23:37] Liz: So this was three years in?

[00:23:39] Phil: Yeah three or four years in.

[00:23:39] Liz: And then you went to the wedding, and then you got worse?

[00:23:43] Phil: Yeah, but only for a few days. Yeah. if I’d gone to the dance, then, you know, that’d been crazy when people were dancing and drinking and making merry and that was not possible.

[00:23:51] Liz: Yeah. Yeah. It’s tough. It’s tough. Missing out on all the weddings. And yeah, I was able to attend to one, but I missed out on four weddings cause I had this in my thirties, too. And it’s like missed out on some fun weddings and it’s, it is kind of tough.

So I guess things really set in after this wedding, and you had a crash, and you were like, okay, maybe I need to have less fun in my life or, what?

[00:24:23] Phil: 

I used to call it miss out on everything, not ME, M.O.O.E.  To have lost my job, my sport, I was in a band.

Liz: You were in a band?

Phil: Yeah, I’m a musician too. And I was in two bands actually. And they both stopped immediately, obviously. Um, so they replaced me.

Liz: What did you play?

[00:24:43] Phil: Guitar. I still do. I still do play guitar. I’ve been in bands recently as well since my recovery.

Phil guitar

[00:24:50] Liz: Oh great, yeah.

[00:24:52] Liz: Okay. So, we’re three, four years in now, can you talk about your, I know the upper trajectory, it’s not like this, out of it. Can you talk about how you ultimately then ended up recovering, and if you incorporated some new practices that helped you get out of M.O.O.E?

[00:25:18] Phil: Sure. Yeah. Um, so I didn’t do graded exercise, but what I did was I paced my activities so my energy was saved.

And then over many, many, many months, I improved slightly. And when I improved slightly, I just felt better for longer every day, most days in a week. So then I was able to take the legitimate risk to try a little increase or to try one more thing. So as a result of having more energy and feeling better, I was able to do a little more and obviously sometimes I got it wrong, and I had a small crash of maybe a few days or a week or at worst a couple of weeks.

But generally I knew my body really well by that. And I was able to do a little more.

And I must stress here, I didn’t feel better because I was doing more. I was doing more because I felt better. 

Yes, It’s really important because I’ve had not just doctors, but also some patient critics online suggest that because I started doing more, I was getting better with activity.

It was the other way around. I was getting better. So I was able to do more activity, both mental and physical. So that’s an introduction to where I went from years sort of four to six.

[00:26:34] Liz: Yeah. So how did that actually look throughout your day?

If you can paint the picture of your day incorporating rest and the physical activity that you did do, knowing that you were listening to your body. This could be different for someone else.

[00:26:48] Phil: It would be different for somebody else. And I must stress. I don’t believe that will happen to me will be everybody’s story for lots of reasons, onset, severity, subgroup of the illness. But for me personally, when I got to the stage where I could do one thing physically a day, I could do one thing mentally a day, and I still rested every day. And then I could have an evening, which was enjoyable.

It’s important to get to the evening and not feel completely defeated by the day. So again, I was very lucky. One of my fellow volunteers at this charity, cause by this time I was volunteering for charity. I was manning phone lines, the helpline for four hours a week.

She had a business that she was wanting me to work for part time, and she knew I was ill. So she said, you can do three hours a day, and I’ll pay you. So I was able to do three hours work a day in her office. And then that’s the mental energy gone. And then I’d have the physical energy to maybe pop into the shops on the way home and do a little bit of shopping.

And then I get home, and I wouldn’t have spent all my beans, and I was just about okay. And so I was able to stabilize with a routine. Um, and for me that was really important. I think that three hours a day at work, some days were tough. And this might sound like a contradiction because people might say, “Oh, you were pushing through them, weren’t you?”

But I got to the point where three hours of work at a desk was not going to trigger a massive crash in my symptoms. So yeah, there were days when I felt a rotten, but it didn’t lead to any big crashes. And these days passed. So I hung in there, and I was super lucky. I know I was lucky, but I hung in there and within two years I was able to go up to seven hours a day full-time work.

[00:28:25] Liz: Oh, wow. So yeah, it was..

[00:28:27] Phil: By that time was eight years in, so it didn’t happen overnight.

[00:28:31] Liz: And I’m just now well, not laughing, but at the person who was like, oh yeah, just 10% (more) every week. Yeah. Thanks for breaking that down. But, I’m wondering if there’s anything I didn’t cover.

[00:28:45] Phil: I’ve got a list here, which I was scrambling around, trying to find before, that’s why I was, a few minutes late. We talked about pacing, resting early, talked about giving in, talked about listening to your body.

And we talked about saving energy for good days to have another good day. That’s all I wrote down when we spoke two weeks ago.

[00:29:02] Liz: Oh yeah. I do want to talk about, you mentioned you worked the phone lines to support people with ME. Can you talk a little bit more about that work and some of the interactions you had with different people with the illness?

[00:29:19] Phil: Yeah, that’s a really good question. So going back to this charity West Care that I was volunteering for, they’d helped me and then they trained me.

I had training to become a telephone support worker, which is not a counselor, but it was talking to people with ME and also carers of people with ME who would ring in and get to speak to me or one of the other volunteers on the phone line. And I spoke to hundreds of people, either who had the syndrome or were caring for a child with it or something.

But the vast majority were females, adults with ME, who were struggling massively. And it was then that I realized how lucky I’d been. I was a single man, but I had a girlfriend who was supportive, and I also had a parent nearby, and I didn’t have any dependents. And I didn’t have any money worries because I actually had insurance.

But these poor people ringing in were regularly. They had children who were taking their energy and their husbands worked. And they felt that they were being bad wives and bad mothers because they could not do the housework. They could not do the cooking. They couldn’t really do anything by the time their child had taken their energy, there’s nothing left.

In fact, they already spent more than their daily energy allowance. And they were crashing. And I’m not for a minute saying all husbands are bad, but some of them would come home and find the house a mess, nothing had been done, and the wife was just on the sofa in pajamas. Um, and he’d say I’ve done a whole day’s work, and I’ve come back to this. So they’ve… 

It was terrible to witness these people who were struggling because society expects people to behave in a certain way and have a certain amount of energy. And this illness robs you completely of that energy. 

So I was lucky. I then realized how lucky I’d been in. And I had the best chance. If anyone was going to recover, I was. It took me over seven years to be sensible again.

But I really enjoyed working on the phones, and I met some lovely people. Some of whom had ME, some had recovered from ME, and the great thing was, they all understood. So as soon as I walked into that office and we put the kettle on, we didn’t have to explain anything to each other. And that’s really important.

And, um, for the rest of my life, anyone with ME wants to talk to me, I understand. And you don’t need to explain because I’ve been there.

It was good. I think I got the award in 2003 for talking to the most sufferers on the phones. I think it was 230 sufferers.

[00:31:41] Liz: Whoa, Phil.

That is amazing. And I really appreciate you saying that about moms in particular. I mean, there’s a lot of women I know are going to be listening to that and all parents, who are really going to appreciate these words and how difficult it can be with kids, and just not able to cook dinner at the end of the day.

And it’s not because you’re a bad mom. It’s because you don’t have the energy and.

[00:32:11] Phil: And you feel rotten anyway, you’re already feeling terrible. And you’re trying to start something to be helpful, to be a better person. And you already feel like death. It’s a terrible illness. So cruel.

[00:32:23] Liz: Exactly. When the key for your recovery was resting extra every day and not spending all your energy.

Liz: So in terms of, I guess, a number like, did you like, okay, I’m going to spend 80% of my energy today or, or was it it’s kind of hard, but.

[00:32:42] Phil: It’s impossible. 

[00:32:43] Liz: Yeah.

[00:32:44] Phil: I was told, okay, the counselors told me in 1998 only spend half the energy you’ve got, half. Half of nothing is nothing. I have so little. And I was thinking, are you joking?

Are you kidding me? I think they tell you to use half of it because they know you’re not going to. And I think, I think if I stayed like 75%, I was doing well. Um, yeah. And occasionally I went up to a hundred and paid for it. But yeah, they told you to save half your energy, which I found completely, really difficult.

 Liz: Yeah, but they know people aren’t gonna…

[00:33:17] Phil: but GET (graded exercise therapy) says use all of it, and then use a bit more the next day or whatever, increase it. I mean, come on. This is nonsense. It’s the polar opposite of what I was told.

[00:33:26] Liz: Yeah. So if you were to write maybe, of course, I’m not going to like write it all out here, but just a couple of key recommendations that can actually help people. Because I personally feel the recommendations out there after the PACE study was kind of debunked, I feel that there’s kind of nothing really that’s in the CDC or your organizations in the UK. It’s kinda just like, deal with it.
 

So are there a couple of bullet points that might be helpful, and we’re just talking here. Yeah.

[00:34:05] Phil: Yeah.

Okay. Um, first of all, the cardinal one is stop before you feel rotten, stop before you feel tired. I mean, I used to feel rotten well before I felt tired. So if you get to the point where you feel rotten, you’ve already over done it.

So stop before you get tired. And that’s the Cardinal one, as far as I’m concerned. Secondly, say no and cancel your plans and your hopes. 

If you’re ambitious and you to do things like I do, just try and learn that it’s okay to cancel it. And it doesn’t mean you’re a bad person or that you have failed.

Um, I was troubled by many, many years of feeling like a failure, and I do realize I was wrong. I realized at the time I was wrong, but it didn’t stop me feeling like a failure. 

You’re not a failure if you cancel plans, even if you feel you’re letting people down, because your health is more important than anything.

So those are two things that come to mind.

[00:35:00] Liz: That is so powerful and so practical. Yeah. That should be written in code. “It’s okay to cancel your plans. You are not a failure.” That should be the medical advice because that’s the reality of it.

[00:35:15] Phil: Exactly. And I still do this now because there’s one activity which will bring back my symptoms.

And when it does, I try and obliterate them and deny them. Didn’t work then. And it doesn’t work now. It doesn’t work. Period. If you’ve got this illness, you can’t think your way out of it. I had a small relapse last year caused by my own stupidity. So people will say, oh, you’re not better than, okay.

So I’m not better then. I can run 10 kilometers every day, but I’m not better. Um, but I did something, and I did relapse, and I felt rotten, and I tried to push away the symptoms and suggest that they weren’t there. And that I was actually fine. Didn’t work at all. And it didn’t work the year before either.

[00:35:57] Liz: So what, what that thing you tried to do?

[00:36:00] Phil: So I’m a runner, and I made the mistake of doing a 10 kilometer race last spring. And I didn’t feel well. Um, I’d eating something that I hadn’t agreed with me, but I did the race anyway, cause I’m ambitious and bloody minded, and I didn’t recover. 

Yeah, it was pretty ugly six weeks actually. But I got better in the end, and I’ve been fine since then. And since then I have done many races.

[00:36:23] Liz: Yeah. And I want to be realistic too. I call myself fully recovered, but it’s not like I can just do whatever. I still have a reasonable bedtime. Like we had some guests over and it was getting late, and I was like, okay guys, this was great. 

I’m not living pedal to the metal or trying to push through everything, but yeah, I’m feeling good.

[00:36:45] Phil: Oh, you’ve just touched on two things I really have to, I have to talk about now.

First of all, the feeling good bit is really important. And I had a Eureka moment a few months ago.

I spent a lot of my time thinking about and writing and working on ME/CFS. It fascinates me, and I realized that it’s important not to do more, but to feel better. So your ambition should be not to walk 20 minutes further next week then you did this week if it makes you feel worse. The ambition should be to walk less and feel better.

If you actually feel better day-to-day or you feel better more of your day, that’s progress. Some of your ambitious friends are going to say, wow, look at you. You went out and walked two miles. Wow. That’s great. But if you feel terrible, you haven’t made any progress at all. You’ve lost it.

So I’d prefer to see people do less than feel better for a greater percentage of their time. Then do more and tell their friends, “yeah, look at me, I walked further,” and inside they’re feeling like death. That’s not how it works.

[00:37:51] Liz: That’s so important because I do know people who, you know, they do start to see progress in their recovery, and then they’ll get in that mindset.

Okay. I can just do a little more, they start to get almost addicted to the increases. And they’re like, I can keep going. I did. I got into ridiculously good shape before my wedding, I was like, I need to, like, it was crazy, oh my gosh. And I had a blip, but love what you said, yeah.

It’s all about feeling better, versus doing more.

[00:38:31] Phil: Yeah. And so the other thing comes on from that is that now that I am better apart from my annual blip. So I’m better 11, 11 and a half months a year I’m well. I feel well every day. And this didn’t happen when I had the illness. I believe in 1999, I only had two good days.

I was ill every single bloody day of every week for 1999, it was the most appalling year of my life. And now. I feel well every single day. And it is amazing to get up and have a cup of tea and look out the window and feel fantastic, and feel the same way all day. Uh, and I hate the illness, and I wish I’d never had it. But the one gift it gave me was that I really appreciate every day, I feel well. And I have no problems with motivation, no problems with feeling keen about life because I’ve got my life back and, just to feel well. Wow.

[00:39:29] Liz: Yeah. I got to say it does give you a new lease on life and new appreciation for just the sun, the air.

[00:39:37] Phil: Yeah. I am going back to work in September, but I haven’t worked for a few years and I don’t, I don’t care about material things. What’s important in life is good health, and that’s all that interests me.

[00:39:51] Liz: Yeah. But you did go on after you saw progress in your forties, you were working in finance, right?

[00:39:58] Phil: Yeah.

[00:39:59] Liz: Yeah.

[00:40:00] Phil: I got back into work when I could. I started off with a very low pressure job, which was seven hours a day, and it was tough. But after a few years of that, I got even better. So one thing we’re really in the recovery phase now, and this is around 2006, and I was working. What I noticed was I’d have occasional bad days, and I’d just go to work and just would get there and sort of log onto my computer and sit there.

And think God, this is awful. And I get through the day and do nothing and go home and go to bed. And then a couple of days later, I’d be feeling better. And after a few years of this, I noticed that I hadn’t got any worse. In fact, if anything. I was bored and I thought, well, I want to do more. So I applied for jobs and I got promoted and I got better roles and better pay.

And so I ended up working for a large bank. And yeah, eventually I got my career back to where it’d been when I got ME, but it took twice as long. And I did face a lot of prejudice along the way. And I did feel I wasn’t recognized, but in the end I threw it away because it didn’t care about it anymore.

And when I finally got back to the level of career that I’d been before, my illness, I realized that I just wants to be happy, and I didn’t want to be rich. I wanted to be happy and enjoy life. I was in my late forties by then. I was thinking blimey, you lost your thirties. Let’s just a let’s enjoy ourselves. Yeah.

[00:41:16] Liz: Yeah. But that’s interesting. Like you have to like get back there to where you wanted to be, to realize that you didn’t need it. You just wanted to be happy.

Liz: And now you’re doing great work. You we’re working for action for ME, and now you’re working for DECODE, and that’s a great initiative that’s going on.

Did you want to talk about decode?

[00:41:39] Phil: Yeah. I’m joining in September. It’s only a part-time job. I’ve negotiated a four day week because I believe in quality of life amongst other things. Um, DECODE. I am an absolute aficionado of biomedical research into this illness.

Because when I got ill, there were no treatments. And here we are 23 years later, and there are still no treatments. 

I mean how, appalling is that for an illness, which is the lowest quality of life, but DECOD ME. I was involved in the patient advisory group, which helped that project gain funding from the UK’s medical research council and is a very, very proud moment.

Last spring, when we got the news, we’ve been awarded the money to start this, this DECODE project, which is – as most of your viewers may well know – DECODE ME, um it’s a genetic project, trying to look at tiny genetic differences, which will explain the illness and hopefully lead to more treatments and ultimately a cure.

[00:42:31] Liz: Yeah. And maybe faster diagnostics too, as well. Yeah.

[00:42:35] Phil: That’s very important. Diagnosis is important. And so, yeah, so. But really we need biomedical answers to this because something is going wrong at a fundamental neurological level. We just don’t know what it is yet.

[00:42:48] Liz: Yeah, well, there’s lots of great research that’s coming out from so many institutions in the past 10 years. I know there’s solve CFS, there is open medicine foundation, and there’s been a lot more initiative in the past 10 years. We still don’t have a cure, but there’s a lot more things that are being revealed.

Is there any other research in particular that you’re excited about?

[00:43:16] Phil: Um, I was, I actually only got involved four years ago. Up to that point, I was still working, and so I wasn’t really that aware. But I’ve been to the CMRC conferences in the UK. Before COVID they used to be in my hometown of Bristol in UK. So I was super excited to go and actually watch some of the world’s leading researchers talk about their work. People like Peter Rowe, Joseph Montoya, and some of the stuff they’re coming out with was just astonishing.

And you just hope it’s going to go somewhere. And occasionally you sort of see research, and you think that guy doesn’t get it. He’s just talking about fatigue. That’s all he’s looking at is fatigue. So it was also an opportunity to talk to researchers face-to-face and explain you really need to understand this illness.

We can research it. You really do. One thing that really excited me recently, it’s talked about all the time now is the two day CPET test, which is where if I wish I’d had this in my day, because I couldn’t explain to doctors how you could do something one day, but then you feel terrible the next day and the day after you feel terrible and they say, but you can do it.

Whereas now you can actually have tests prove that physiologically, it’s had a negative effect on you 24 hours later. 

[00:44:26] Liz: I would be scared to do that one because I wouldn’t, I’m hoping they get like a blood test because I wouldn’t want to be put on like the treadmill, I think the VO2. I would be too scared to have done that. And of course, like in the early days, oh my gosh, for you, how would you have not gotten to the clinic to do such a test?

Yeah. So we did not talk about a big topic and we’re getting near the end here.

 Yeah. So Phil, did you try any diets and were any diet changes helpful or, was that a fruitless cause?

[00:45:03] Phil: So, yes, that’s a good question. And I did try some diets and changes to diet. I also went to see a naturopath to try and get some answers because I was suffering from terrible indigestion.

If you call it that, in addition to my ME/CFS symptoms. Um, so I did see a dietician, and I was also tested for allergies. And so as a result of this, I tried to cut out some food types and I also tried food combining. So I was not eating protein and carbs at the same time. And it didn’t really help me at all.

And when I got better, I noticed that I was able to eat stuff again, that I had been told was making me ill.

And that includes alcohol and includes takeaways, not every night, but it does include curries. And dairy and other stuff. So my belief is that what you eat doesn’t make you ill, but because you’re ill, you’re struggling with the food stuff. So cutting out the food stuff may make your symptoms less severe, and it may also help you be more comfortable.

And for me, it was comfort because I’d be so bloated, that was terrible. But you’re not bloated because of the food, you’re bloated because you’re ill. Now, when you improve, you’ll probably find, you can go back to those foodstuffs and be all right. So I do believe diet’s very important to have good, healthy diet.

I would also suggest people try eating carefully and in small amounts, but I don’t believe food has made you ill, I think it’s because you’re ill, you’re having problems with food.

[00:46:39] Liz: Yeah. And as you recover and aren’t pushing through every day, your body’s going to have more energy to actually digest your food.

So while you don’t want to eat a bunch of junk food, what?

[00:46:55] Phil: Yeah, it’s hard though because when you’re feeling rotten, you want a bar of chocolate and you know, it’s the wrong thing to do. It helps in the first five minutes and then it doesn’t. But even now the one lesson I’ve learned, and I take it to me now is don’t eat when you’re tired.

Don’t eat when you’re tired. So even now, occasionally, because I do a lot of endurance sports, if I’m really tired and it’s nearly mealtime, I’ll go and have a 15 minute lie down before eating.

[00:47:18] Liz: That’s a really good tip.

[00:47:20] Phil: Yeah. I hope so. I mean, it’s my fault I’m tired because I’ve gone and run 12 miles or something.

But yes, snacking’s good, but do not eat a big meal when you’re already exhausted is my top tip.

[00:47:32] Liz: Oh yeah. That’s yeah, very sensible advice

Liz: So anything more you want to share about your life now?

You’re running 15 kilometers. Did we cover it all?

[00:47:45] Phil: It’s interesting. I’m really lucky. I love my life, and I enjoy rock climbing, and running, and orienteering, and hillwalking. I’m running the great north run in Great Britain next month for ME charity, and just to be able to run that far would have been unthinkable.

In fact, if you’d asked me 20 years ago, I would have said I’d never run a half marathon again, 13 miles, but I’ve ran one in April this year and it went really well. And I had no ill effects, so I can’t wait. So I’m training for that, really looking forward to it. Um, I never got back to the speed of a runner I was before my illness, but that’s okay.

Phil orienteer race

When I got to 45, I started climbing even harder than I ever had done before my ME. So you can imagine how happy I was about that. 

Absolutely over the moon, but I am still involved with this illness because one of the British MPs who is supporting us, she says that ME is the greatest medical scandal of the 21st century.

And I believe it is because if you look at the quality of life chart, it has the lowest quality of life of all major chronic illnesses, the lowest, and yet it receives the worst funding and it has the greatest stigma and disbelief around it. 

qol

So I am still appalled every day that this illness is treated so badly, worldwide and dismissed and ignored and underfunded and shrugged off with “oh maybe you should think about your symptoms a little less or do a little more every day.” This is what keeps me going. I really I’m passionate about that and I really wish that other people can have the same outcome that I did. I know that’s unrealistic, but everyone should have a chance.

[00:49:17] Liz: Yeah.

Everyone should have a chance. And also the work you’re doing for a biomedical cure and diagnostics is so important, and I really support that as well. So I’m just so grateful to share your story and your words of wisdom and your call to action for more biomedical research. Yeah.

[00:49:41] Phil: Yeah. I just think there needs to be a huge investment in biomedical research to turn the corner with this. So we get some real answers and, and I’ve actually, I’ve said this on radio before, once we actually find out what the subgroups of the illness are,

We can then have targeted biomedical treatments for those subgroups.

And I do know anecdotally of a few people who feel a lot better using a certain drug, which is not always available in the NHS. But not everyone feels better. But because they do, they have a better quality of life.

So that’s an example of where we need to find out targeted treatments for different phenotypes of this illness in my opinion. And I’m hoping that a genetic study in large study with over 20,000 participants will help unravel some of those answers.

[00:50:26] Liz: Yeah, powerfully stated, such important work.

And yeah, I just wish you the best Phil and the work you’re doing. And so glad to have you share your message with our audience today. This was awesome.

[00:50:45] Phil: Thank you. And it’s good to see that you’re all about as well. And you’ve come through and thank you for the opportunity to speak about this, and be added to your gallery of people who well or on the way to being well. And may we all stay that way.

[00:50:59] Liz: Yeah.

This was great.

If you’d like practical and uplifting health recovery information, please sign up for our newsletter below. This blog is not medical advice nor meant to contradict what you have discovered yourself to be true. 

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