“Phil’s well”; “Phil’s sick again” - November 2023 -a blip?

 

“Phil’s well”; “Phil’s sick again”

 The simplistic dichotomy of the above does not ever represent any reality.

 Those uninterested in chronic illness/my story can stop reading now, but the past two days have been astonishingly bad.

 I’ve been in really good health for almost 6 months, since a crash in mid-May following 4 months of ill-health. I have had NO “bad” days in Sheffield since moving there in May. None.

 Ah: Sheffield must be “good” for you, right?

 Scotland was “bad” for you, right? (**)

 So I’m “better”, right?

 No; back in autumn 2021 when a simple short 2-day “gastric” “upset” brought back swimming head, PEM, exertion intolerance & brain fog, I have realised I was NEVER “recovered” from the disgracefully badly researched & misunderstood chronic life-ruining illness “ME/CFS” (also contains postviral fatigue syndrome, Long Covid; Vaccine injury, among many under that umbrella)

 Remission was hard won (that’s another story), but I had seemingly gained it again. A wonderful 2-weeks trip to Kalymnos where I climbed harder than ever seemed to confirm this.  A year ago, I also had a great trip to Kalymnos, with one “poo” day. But that was also a big success.

 Last weekend I noticed I was *very* tired.  I’d had a 17 hour journey (door to door: 19 hours bed-to-bed) to return from Greece. “That would make anyone tired, Phil!!!” everyone would shout. Of course. And I was very tired . Nothing to see here.

 I was still tired Sunday morning, went for a walk, was SHATTERED that afternoon & had to nap.

 Monday, I went to the indoor wall – I felt sooo tired, but “everyone’s tired Phil!”.  I climbed REALLY well – proving I was well, right?

 Right?

 Of course not. I was climbing well because I’ve just had 2 of the finest week’s rock climbing of my life. I was SHATTERED afterwards, went to the shops, napped again….. I just need a good night’s sleep….. sooooo tired…….. I’m fine….. (*)

 Packed up – SHATTERED - the following morning to come to Scotland – arrived (the drive was mercifully problem-free) – I was so tired I could barely be sociable.

 The next two days – alone in a house in Peebles – I was completely poleaxed, napping morning, afternoon & evening on sofa.  Cat pics are nice & everything, in fact the cats liked having me poleaxed and in dressing gown.

 Yesterday I managed to take a shower, and that was an achievement.

 I have had no “brain fog”, which for me is the worst, the most glaring and indicative symptom of a serious crash. I have had terrible indigestion, though, which goes hand in hand with a “crash”. It was so bad two nights ago, I actually HAD NO TEA, as my stomach had been distended & bloated for 6 hours in the run up to the evening.  

 I make sure I never say I’m recovered from “ME/CFS” anymore, ever.  How can I, when I could, right now (or with a bit of travel) make myself horribly ill, by either a) trying to run, say, 5 miles or more; b) hiking up the biggest mountain I can find, eg. Ben Chonzie, or c) going anywhere near an Alp above 2300m with some rocks, snow, ice & exposure, particularly if there’s a chair lift or cable car involved.  

 Life isn’t perfect. I’m just trying to navigate it, & this week, I got it wrong / my situation/s (travel) were simply too much for me.  We all “get tired”, but we do NOT all have the condition I carry below the surface all the time.

 Compared to most with ME/CFS/PvFS/ LongCovid, Vax injury, Lyme, etc, I am one lucky fucker, and I know it. I seem to know how to make MYSELF improve/ go into remission; but it doesn’t work for most.

 But (as someone who used to be held up as an example of a “full recovery” case from ME/CFS), I have accepted I will never be free of this curse.  There will be no “cure” anywhere near my lifetime. I’ve accepted  that, although I am heartbroken for the 100s of thousands who suffer for decades with no remissions, no treatments, no support. (I’m only sad about the loss of my high-performing veteran running & orienteering career; but sport is a luxury, of course).

 I can choose to be well.

 (*) People often think those with chronic fatigue focus too much on their symptoms. In fact it’s the opposite – we try to make out that we’re well, even when inside we are struggling. My best mate said (on telling him how tired I’d been on Monday) “You hid that well!”. Of course I did – I was in denial, and did not want it to be true.  But heh, “top” psychiatrists say we “focus too much on our symptoms”, so it must be true – right?  No.  They have caused untold damage to the cause in the past 33 years.  Fuck you.

 (**) I’ve worked out that I was very unwell for approximately a third of my residence in Scotland. In my better times, I ran my best half marathon since my 20s, I finished second in the Scottish & British Long distance orienteering championships, helped my club win gold in the mixed sprint relays British champs, I traversed Glencoe twice bagging many Munroes; I got a job working on genetic research into ME/CFS, I played guitar at a ME/cfs demo at Holyrood, so ….. it’s merely circumstantial. But …. how ironic, my complete collapse on arriving back here this week …… just irony, right?

 Right, Mr Truman? (that’s another story) .... 😕

March 2023 - Phil threw it all away again, didn't he? 

Don't do this on new years' eve if you've spent all Christmas break with brain fog, cos you won't be "better" just because you *want* to be "better", haven't you learned? 

OK, so post-November Blog entry - where I thought I was pretty-much better (& my housemate, who sees it ALL, agreed & even suggested “there’s nothing wrong with you anymore!)” - I have lost it again, and I did this by a small sequence of errors, which in no way deserved the outcome - months more sickness, and easily-triggered brain fog / malaise.

 (First. I must point out that I am in no way as unwell as I was this time last year. Nothing like. Vastly better PoTS, milder brain fog, and no gastric symptoms, and exertion tolerance - whilst pitiful - is not non-existent, as it was last January - March. No night-time tachycardia, either)

 Having climbed in Greece harder than ever since 2017 (amazing!), I returned full of hope in early November. I “celebrated” my 25 year ME-versary (5/11/1997), and continued life, climbing indoors, jogging, feeling 100% well every day,  and jog/running some orienteering races.  In mid-November, I was first over 50 veteran in an Edinburgh race; catching & dropping other “old” guys. Late November, due to my navigational abilities, I won outright a race in East Lothian.  Yes - 1^st place. (an hour).

 So what does this do? It tells me I am well, and that I can do more. So what do I do? I do more:  I (finally) ran 5km in a one-er (25 mins), and that was fine - zero payback. I then had a weird 2-week spell of chest pain - surely muscular? - I had a load of tests and, unsurprisingly, all came back fine.  I celebrated by going for another 5km run - all in one - I had been fine 3 weeks earlier, so “my boundaries” told me this was risk free.  I felt grim, & my pulse was too high, but “I said I was going to do it so I’m doing it”.

 In “theory”, this was all “fine” - we “know our bodies”, we “know what we can do”, we “know our limits”, right?

 RIGHT?

 Not fine. Bang goes 2023. It was 21^st December. My Christmas & New Years were HORRIBLE - brain fog & excessive “fatigue”. “Oh I’ll be fine in a few days!” - but I wasn’t!! I climbed indoors on NYE - “indoor climbing never affects me!” - well it does, Phil, when you’re already a) in denial & b) in a crash.

 January was hell, I suffered terrible indigestion on top of brain fog & “easy fatigueability”(oh how benign that sounds!). A holiday to Portugal was cancelled for the second year in a row (Earth to Phil.... hello?). My housemate has been through too much now, and this was, & is , the final straw. I could NOT - no matter HOW much I paced, rested, etc - shake off the brain fog. A few small “things” led to more bad days, which stretched on, & on….. 

 February saw an improvement (ABOUT f***ING TIME), I was home alone 2+ weeks, and stabilised, even attending Scottish parliament for the ME debate in Holyrood.  I then cat/house-sat in Sheffield for 2+ weeks, and felt really well for 80% of the time, but sadly, in my mind, I was 100% fine again. And, stupidly, I re-introduced two things (NEVER introduce two things at once!) - indoor easy rock climbing, & easy jog/walk orienteering “races” (one of which I won - I used to be an international (veteran) at this sport.... quite good at it, y'know... feels like riding a bike..... )

 Result? Yep - brain fog, feeling rotten, fatigued - all over again. 

Most of January was spent like this. Not all bad, of course.... but terrible indigestion on top of brain fog & zero "exertion tolerance".

 Looking at Steve Birkinshaw’s blog -a record breaking endurance fell runner & orienteer (our paths have crossed a few times) - he also noted that following his 7-day record Wainwrights run, he got terrible fatigue & brain fog for up to 18 months (!) later. He had many tests & was eventually left (like me) with “CFS” (yuk). His blog entries for 2015 tell a story all too familiar…. I should be OK by now… why am I not? But I note that he, like me, had issues when his HR went above 130. I think this is key during this period of “recovery” - keep the HR below say 120 (walking uphill, it can get that high), & wait, & wait. Worked last year.  Should work again (already as I type this, I feel improved).

 * * * * *

 “Phil’s fine!”

 “Phil’s not fine!”

This stupid, over-simplistic dichotomy needs to be culled. I have good patches & I have bad ones. The trouble is, that during the BAD patches I cannot imagine why I was ever “well”, and during the “good” spells, I am, as far as I can see, 100% fine and all’s well, I will never crash again. In effect, I gaslight myself.

Moving on. I used EliteHRV for 2 months but it told me nothing, & my readings were generally fine. I’m starting the Visible App, which other pwME & pwLC use, out of interest really. Will give me something to do, & compare to others. I still really believe that I am not that sick! Obviously, it’s disappointing to see that I am again in “reductive” mode (ie. I am still reducing what I do in an attempt to get full - and I mean FULL - control over symptoms).

 (*) - in my case of ME/cfs, postviral syndrome, whatever,

 I remain unable to partake in DecodeME (where I worked until Feb 2022), as I am not sick enough.  I do not meet ME/CFS ICC or IOM criteria. So - I am “not ill” - I have no diagnosis - and no one - NO ONE - will *ever* research the likes of me. I am past caring, I knew this 15+ years ago, so the responsibility to improve lies solely & wholly with me. How will I do?

 Watch this space.  nb. played guitar in a wonderful local Open Mic evening - we had another session the following evening at a friend's house - I crashed on Sunday but was on the "up" by Tuesday. 

                        November 2022 - is the fat lady singing yet? & one slump

I’m not sure I need to continue a quarterly blog, but the past three months have been interesting, and really very good; with one (grim) blip which was, in all likelihood, caused by the extreme heat conditions clashing with the biggest test yet - a test I (understandably) failed.  And, instead of 1-2 bad days, it was the best part of 2 weeks. Ouch…. but - I brought it on myself.  It was “optional”.

 But that was mid-August. The trigger was doing 3 “races” (!) in a week (jog / walking them - it’s orienteering, not pure running), the first two were OK (I even won one), but the final one - on my birthday! - in 28degree heat, no shade, an hour on my feet, & my HR going up to 160 - 170+, was too much. To compound this, I spent the next day standing up (mostly) at our local music festival in continuing heat (with beers); & the FOLLOWING day, we walked up a Munro - Ben Chonzie - 10 miles, and 800m of climb, 6.5 hours.  Too much over those three days….. I started feeling terribly “tired” the whole time, but (typical denial!) said ”It’s only tired! I’m fine! Being tired is normal”. Sadly, after 2-3 days of denial, it wasn’t just tiredness, & the hideous “brain wrong” / fog / clamp / malaise / empty feeling of being lost & hopeless had returned.

 I did recover, my confidence shattered, and I slowly re-started my activities, with no further record heatwaves or insanely hot “races” to contend with. Unsurprisingly (given my usual pattern of recovery from crashes during postviral illness spells), I got back to “baseline” (*) within a couple of weeks. Though, as always, I felt I wouldn’t, & that I had, again, “blown it” (sigh).

 And so on.  September saw the planning of the Scotland #MillionsMissing (for ME Action) take place outside Scottish Parliament, Holyrood, delayed two weeks due to the Queen’s death.  I’d co-organised the Bristol demo in 2018, and assisted in 2019, both times playing my guitar.  This went really well. Facebook post here

 

                              ME Action Scotland, #MillionsMissing demo, Holyrood, Edinburgh September 2022

I’ve been rock climbing, more & more, and in late October I went to my happy place, Kalymnos, for my 8^th or 9^th (!) rock climbing trip there (as I’ve always said, if Carlsberg did climbing trips…..).  I’ve been doing a fair bit of outdoor & indoor climbing, slowly getting better & stronger / more confident. But on Kalymnos, I felt like a Phoenix rising from the ashes. I climbed my hardest routes (6b+ / 6c), since 2017. Amazing. And so happy.

 

                                             Telendos Island from Massouri. The view to die for. 

Me leading a "6a", Poets, Kalymnos, at the end of the day

Straight from the crag to the bar. It's the law. 

Running & cycling are still a little problematic. My HR goes up very high. 150 - 170, within 10 mins. So I’m jogging  walking ; 60 secs on , 60 secs off. 20 - 40 mins. No symptoms, no PEM - any payback would be completely unacceptable, and I would ramp it back. This is NOT G.E.T., and, as I say, I will only continue if there are no consequences whatsoever from my exertions.  Hiking up to 12km in the hills seems absolutely fine, so this is a good thing, & I will continue (I am of the firm belief that, if you can do a certain amount without any payback at all, you should. Lying around the whole time / over resting isn’t good; if you can - and *only* if you can - move, get the body / brain / blood circulating & moving). (100% realise many with ME/cfs cannot do this, & I empathise, having been in the same position in Feb - April).

 At some point I need to start seeing if I can go further. Before my Oct 2021 crash, my HR was, it seems, very high during hard running. I was well, though, so that was fine. Apparently. But this means that, as & if/when I continue improving, at some point, I *should* be able to achieve this again. No rush, though. I will continue doing low key orienteering events (“races”), and walk the bits that I find are a bit tough,  keeping one eye on my Garmin for my HR.  

 

Lakes 5-days, August. This went well until the final day. I had a bad ~2-week crash thereafter.

I’m not so busy with ME/CFS work nowadays. All my roles are gone, for the first time in nearly 7 years. That’s good, though. I’m still involved with ME Action Scotland &, after the work put in to execute MillionsMissing successfully, I feel a great affinity with my fellow volunteers, all of whom I admire greatly. So I will keep my hand in there!

My video from August 2021 remains my finest & last word on the management of my condition.  Please watch & share, and I hope it helps; always happy to answer questions on it. One thing about it that may come across too “strict” is, “resting on your good days as well as your bad”. I do not mean, you’ve got to rest ALL day EVERY good day! I just mean, on a good day, take *some* time out to do some relaxing. The tendency, on a good day, is to “burn on through” & get in a “full day” like a “normal person”.  I made this mistake loads of times. Vastly better to do a morning of “stuff”, then chill, say for 2 hours post lunch, then have renewed energy for the afternoon. Get to bedtime tired in a “normal” way - not frazzled /  “wired” / headachy.  Then…. maybe … one good day may become two.  

 

Good luck, my wonderful ME/CFS / LC friends. I stand with you as always.  I’m still around! 

Northumberland, October. A wonderful walk

 

 

 

Q2 2022 – Now, then!

View from the terrace of La Soldanelle, Chateaux d'Oex, June 2022 - temperature around 31degs! 

So my previous blog, 3 months ago, told the sorry tale of stuff like “2022 is now a quarter over, and it has been a total write-off, a once-in-20-years disaster, there are no other words to describe it. “

-       Was I exaggerating? No, I was not.. 

But, in the past 3 months, things have changed so much, & I am astonished.

Remember: Between January & the end of March, I had about 2 “good” days per month. I lost my job at DecodeME ("gutted" does not even begin to describe it). (right decision:  I remained very unwell for a good six weeks after leaving the project at end Feb).

Now – it’s 1-2 “bad” days per month. And the turnaround came at Easter-ish, & was rapid. My sister visited & I overdid it (café visit, some driving, browsing a shop) – and I suffered a 36-hour crash, the worst of which was awful – brain fog, etc. She then drove me to Newcastle to visit a relative, & I was super nervous about the whole thing. But 2 days later, on our return, I felt …. different. The stressors that had caused bad, bad days in the weeks previously (you know – standing up, talking too much, driving, overdoing the TV / laptop etc) weren’t causing any symptoms. 

By mid-May I risked a trip to see a mate in the Lakes. I walked “up” a “slope” to a small lake. It wasn’t even very pretty. I felt OK, not perfect, but the experience was enriching. On the drive back I felt ecstatic, & visited Carlisle, & some shops, & the Tweedsmuir hills (just to look at). Oops.  

2 days later I had a pretty bad day, & I was gutted.

But the next bad day wasn’t until over a month later, caused by a serious heatwave (& a longgg, tricky travel day to Geneva) (28degs at night!). I bounced back from this and enjoyed the final 2-3 days of the trip, ongoing heatwave notwithstanding. The journey back was as bad, but this time – no crash…. Hmmm …..

Early June, I saw a private Cardiologist on recommendation, Sanjay Gupta at York Cardiology, as my PoTS-like symptoms (tachycardia on standing) were generally bad, and probably worse by April than the CFS like symptoms / exertion intolerance (not that I was/am pushing the exertion!).  He diagnosed me with “Postviral Dysautonomia”, a diagnosis I agree with, though I do still have an element / risk of CFS / PEM.

He agreed to start me on low dose drugs to control my heart rate – not beta blockers, but ivabradine. Not sure how much this is helping, but I’ll take it.

I feel well all day nearly everyday now, and zero symptoms (apart from racing heart on standing if I’ve been drinking alcohol).  No fog – no stomach issues, no brain “wrong” / excess fatigue (except on those rare bad days).  Zero symptoms, for me, has to be the starting point.

Three weeks ago, sadly a musician friend had passed away, and I made the rather risky trip to Bristol for his funeral.  But I had a very good week (despite the sad original reason for being there), catching up with many friends & even making some new ones. I’d not been back since moving my entire life north of the border over a year ago. It was lovely to be back.  I felt fine the whole trip. 100%; really. 

I re-evaluate my lifestyle – I have no wish to return to cut throat competitions, I was racing sooooo hard last year (18:19 5km, anyone? Or 85:33 Half marathon?) (plus flat out intense British Sprint relays orienteering – gold in relay, 5^th in individual).  instead, I want to enjoy feeling well, and the outdoors, and walks. I feel easy climbing might be a first step, but 2022 is a fallow year (if I’m lucky), and no desire for “winning” until I’m 60, I reckon (or never!).  

So: where from here? Where do I go? Nowhere. I am loving living in the present, and am not making plans. To feel well is the best "gift" of all. I will never take it for granted again, and I shall not risk it all again for some local parkrun in a rather slow time. 

Also, I've been increasing my activities gently, using a heart rate strap/Garmin watch, and have gone from walking for 10 minutes, to over an hour, with no issues. Cycling is not possible as my HR goes too high for comfort. Indoor climbing I've done once - bouldering - and it was a success & vastly less stressful for my heart than 10 mins on a bike. I reiterate, as always, I'm not feeling better because I'm doing more: I'm doing more because I *already* feel better - very important distinction). (no GET here). So I am rehabbing myself.  Says the man who doesn't agree with Rehab programs for ME/cfs / LC ..... you probably have worked out why. 

Hello, old friend: life…  

Postscript: The big question has to be: why do some people (me!) recover (given a chance - #StopRestPace; #DoLessFeelBetter) from postviral-tyle “CFS”/M.E. type illnesses, and others do not? Does medicine care about such details?  I am baffled as to my improvement. Sure: I know when to quit, and it seems to work for me – but not others – and that’s a mystery that needs unravelling….. 

May 2022 - The Filter House , near Patterdale - finding my happy spot, amazed to feel so well, above a small "house" a friend is renovating. We ate, drank wine & ... both went to bed super early! Not much to do up there! 

Great to catch up with Mike of Mike's EU Marathons while in Bristol. He was about to leave for Liechtenstein .... where he did his toughest marathon yet! Amazing! 

Great to meet Ange again after wayyyyy too long! - she still thinks I'm some sort of running hero, even though I can no longer run at all (& certainly can't do 5km at her pace these days!) (18:51!). 

June 2022 - near Gstaad with sister - short walk around lake with rests / picnic in shade. 

 Article published in Compass Sport Magazine, February 2022. 

 

 

The Chronic Fatigue Syndromes, M.E., and Endurance Sports, by Phil Murray INT

 

"Hey, I'm tired too!" Many people feel tired, and many people get poorly. We lead busy lives and that's work, sport, social, peer group expectations, digital media, everything. You can easily fall sick in the current climate, and if you do multi-day orienteering events, it's likely you know what "being knackered" feels like. Some of us were almost relieved the Scottish 6 days was just 3 stages each! But: imagine that you've had no sleep, you've got a terrible hangover, you're going down with the flu, and you're asked to race a 10k. Which you do. This is getting close to what the feeling of having CFS ("Chronic Fatigue Syndrome") is like - except it's not usefully explained by the circumstances listed above, and, when they are removed, you remain feeling terrible, for a long time - and I mean long.

CFS (poorly named, as "fatigue" is only one of a myriad of symptoms that present) is often triggered by a viral infection, striking fast (this happened to me, acutely, in 1997 aged 33, and I was then "off work" on benefits for 4 years, & rehabilitating for the next three. At my worst I could not prepare food. I had a bucket by my bed and I could not hold conversations for more than 10 minutes). At the severe end, it is called "M.E." (Myalgic Encephalomyelitis), which is a diagnosis of dread - bedridden figures lying in darkened rooms with eye masks on comes to mind. However, not all sufferers will end up in bed / housebound for years with no hope or improvement in sight. CFS comprises many more symptoms than *just* fatigue. Overwhelming exhaustion, orthostatic intolerance, digestive problems, myalgia, sleep regulation problems, heartrate issues, skin rashes, nausea/bloating, and (one of the worst) "Brain fog" where you feel just outright terrible/unwell in your head, and it's not a headache, there is no relief anywhere (allopathic medicine has literally nothing to offer). Not even after sleep, as unrefreshing sleep is also a symptom.  Bad hangovers - but without the alcohol. The cardinal symptom of CFS / M.E. is what’s known as "post-exertional malaise". You do a thing, you feel reasonable, but 24-48 hours later, there's a huge spike in symptoms, and you feel utterly rotten (just as everyone else has started recovering normally). So, if you're "really knackered" at the end of the latest Mountain Marathon, that's not CFS - that's normal. 

There are many types of Chronic Fatigue Syndrome, and the end diagnosis/clinical picture tends to be arrived at by often varying paths. I know of at least one elite orienteer/potential elite orienteer who has arrived at this state of sickness via each of the following: post-glandular fever (common among the young, sociable & active); post-virus (that'll be me; plus others I know), post-Lyme infection, overtraining, and post-vaccination. Sadly, the medical profession barely acknowledges some of these - in particular, vaccine injury and chronic Lyme disease. I was lucky - I was taken seriously very quickly & told to go and rest. 

Back in the 1980s there was only one type of fell runner - the tough one. The more you ran, the “harder” you were. Feeling sick? Run it off. Got a cold? Do that race anyway, you'll be "fine" afterwards. Two notable casualties of this attitude were high-end elite level, record breaking, GB-representing athletes - the legend that is Kenny Stuart, and Dave Cannon (for more, see The Fellrunner Summer & Winter 2017). Both also ran superb road marathons (c.2:11), and both had their careers obliterated (never to return) by CFS or M.E. Another top UK marathoner, Sarah Rowell, once the UK record holder, had her career interrupted by CFS symptoms - happily, she moved into fell running, and I gather she's enjoying sport and health again now. Recent Wainwright Round record-holding ultra fell runner/orienteer Steve Birkinshaw also had a period of CFS after his record week-long run (see his blog – 20th Dec 2015) - happily I gather he's not doing badly today! (though he lost that record!). 

Of course, we are now in the era of COVID-19, and this means a new postviral syndrome: "Long COVID" (again, I know someone who has this badly - off work since March 2020). While the sensationalist press announce that Long Covid is "a completely new disease", those of us "in the know" collectively sigh - no, it's not; it's just that these illnesses have been ignored by science for decades (There was a post-SARS spike in M.E. cases too, but many will have forgotten them - some remain sick still today). 

Research into the causes of CFS & M.E. have been appallingly underfunded in recent decades, and have targeted the wrong areas - namely behavioural. The theory being, the more you do (in increments), and the less you "worry" about how utterly, awfully unwell you feel, the "better" you'll get. This, accompanied by a "stay positive!" attitude, has led to many people getting measurably worse, or remaining ill for a very long time. The NICE guidelines (National Institute for Clinical Excellence) for CFS/ME (2007 version) essentially stated that graded exercise and CBT (cognitive behavioural therapy) could successfully treat “many” with CFS.  Had this been the case, we'd have been the first to celebrate. But this is not the case. It is merely a “theory” – one that has been comprehensively discredited in recent years. Fortunately, and after several years of due process, the NICE guidelines have recently reverted back to what they were when I got ill in 1997 - ie. there is no effective treatment. Yes - no treatment for an illness with the worst Quality of Life of *all* chronic illnesses, and with a cost to the UK economy of £3.3billion annually. 

So, what to do?  Well, as someone who has worked on a charity helpline for M.E. sufferers and effected at least three "recoveries" for myself, the best option is: listen to your body, and absolutely rest if you need it. If you feel good one day, do not rush out & do that big run / Brown course / over-celebrate at that Xmas party. Have an easy day. Then one good day might become two… might become three…. But absolutely key to all of this is quality rest. And, by rest, I mean "real" rest. Not scrolling through your phone, "working from home", going to the pictures, or binging on Netflix. I was lucky enough to be advised (in the late 1990s – pre-fast Internet) to rest on my good days as well as my bad, and also, on good days, to stop any activity well *before* feeling rotten (not *just* tired). 

 

What about coming back to one the most demanding of sports (from any viral illness, eg. COVID, flu etc) - endurance running, and (coupled with the mental challenges of navigation), this surely makes orienteering a near-impossibility? Well! I now know it's not just possible, but it can be immensely rewarding, and you can get back to a decent level. You have to start slow and try shorter, easier courses initially. Monitor your reaction to them. Do not launch straight back into a full training & racing program. (After my first Green course post-ME/cfs, in 2005, I felt lousy for days - but the next event, another Green, I only felt rough for a single day - the Monday!). Runs can be at well below threshold pace. As you're going slower, take time to make no mistakes. This will feel good, and also you may sneak past faster runners in the results!  

Early on in my comeback from my illness, I would have to skip Easter Sunday's JK Long Individual Day 2, so I could race the Relay properly. This paid off with some BOK podiums. Later in the 2010s though, I had seemingly recovered 100%, so I was doing all days. And loving it. 

With good management, most people with CFS can and should make substantial improvements, if not total recoveries. I considered myself back in remission *at time of drafting (December 2021)*, but my latest blip (within two weeks of my British Long Distance podium, I was again felled by a postviral reaction) shows that I will likely never be free of CFS/ME. The illness remains a mystery, but there *are* ways to keep your future open & positive.  Just don't try and beat it by ignoring it! No prizes for bravely fighting on here.  And recovery … feels so sweet. 

Note from 25th January: Phil has shelved his early 2022 O plans due to another dip in his chronic fatigue syndrome. 

Phil Murray, Borders, Scotland, M55 / INT / RR

Trustee: www.actionforme.org.uk  #### now ex-Trustee 

Research assistant: www.decodeme.org.uk  #### now ex-research assistant

Edit: sadly I have had to admit defeat again in January 2022, and take time of work to try to recover from another relapse. I have completely cancelled my 2022 spring running / orienteering season. EDIT - lost my job - crash continued.....  

Ref: Chronic Fatigue Syndrome in elite athletes: four cases by Steve Chilton from the 2017 Summer Fellrunner:  https://itsahill.files.wordpress.com/2018/01/cfsarticle.pdf 

 

 

 

1 - https://meassociation.org.uk/wp-content/uploads/ME-Factsheet-What-you-need-to-know.pdf

 

Q1 2022 – How’s it been?

(Note: I do not meet the diagnostic criteria for "M.E./CFS" - Whilst I am very unwell, and everyone's saying "Phil's M.E. is back!", this is not strictly true - although I am clearly suffering from a postviral disabling condition, as yet undiagnosed by my GP).  (I'd give myself "PoTS/postviral CFS") ....

 

Liz's cats have proved my main "activity" in 2022.

2022 is now a quarter over, and it has been a total write-off, a once-in-20-years disaster, there are no other words to describe it. 

Here’s the summary:

October 2021 – minor gastro virus & dizziness, malaise, fatigue, post exertional flares (brain fog).

6 weeks unwell – malaise; “dizzy”. Worst at 3 weeks (one week off work). Sport abandoned.

December 2021 – suddenly (spontaneously!) symptom free, re-introducing exercise gradually – walks, jogs, easy climbing. Optimistic (this would prove my fatal undoing). No symptoms in December; work fine (& a pleasure). 

 

Early January 2022 – Overdid the running on NYD (Parkrun @ 80% effort). Mid-January – (probable) short, violent gastro virus.

Malaise (ceaseless brain symptoms / fog) ALL of January; off work sick 3 weeks.  Including distressing & continuous (on bad days) IBS-like gastro symptoms.

Noticed (Orthostatic Intolerance?) racing heart early Feb (up to 150 bpm on standing). Health continued to decline. Left job by mutual consent by end Feb (5 weeks off sick in 7 weeks). Unable to travel / shop / walk 1km. Pulse on standing increase of 40 – 50bpm (plus feet turning pink).

End March – IBS/ stomach issues resolved; malaise & fatigue / fog in gradual remission (rest/pacing); PoTS ongoing but pulse increase down to 30bpm. NASA Lean test data available.

 

I can safely say that the New Years Day Parkrun (seemed a good, new-years-ey positive thing to do, right? Sociable, too – smiling faces everywhere, café visit after….) – time 22:14, compare that to 19:13 when coming second at 100% effort & 100% fitness in Sept 2021 – was ONE OF THE BIGGEST MISTAKES OF MY ENTIRE LIFE.  

No, this is not an exaggeration.

I lost my health, I developed PoTS, &, despite saying I would not relinquish my 4-day a week WFH job (about which I was passionate – the best job I could have had), I eventually was forced to admit (after 5 week’s sick leave in 7 weeks – come ON!), that it had to go; and I had (optimistically) booked a holiday to Portugal for late February that I clearly could not go on (I cannot stand in a line; walk for >6 minutes; my pulse goes to over 120; blood pools in my lower legs & feet, which go pink), and in fact, having made the decision not to travel, I spent the next three days BEDRIDDEN with terrible IBS, CFS and PoTS symptoms.

In the past month, post-losing job, I have, through diligent pacing, resting etc, (and having NO LIFE WHATSOEVER) stabilized my situation, and now, good days outnumber the bad – so long as I do not do anything.  We finally worked out why EVERY time I went to town in the car to go food shopping, I was ill (get this: One trip to Tesco in mid-January – when I rightly assumed I was going to be OK– who wouldn’t? - led to THREE WEEKS OFF SICK, people!).  It wasn’t the drive, it was the more than 10 minutes in the shops.  More than one shop, that fateful day, as I was feeling efficient, & wanted to get things done.

I got three week’s sick leave as a reward. And felt AWFUL (brain fog & fatigue)

…

So, Liz & I (I enjoy driving) have devised a solution: I drive to town, we go into Aldi together, I spend max 10 mins MOVING AROUND & getting stuff for the trolley; I go back to car & put feet up literally (no way can I stand in a queue). Then drive home & unpack, which I can help with briefly & quickly – pulse usually around 100 for this.

Going forward, how hopeful can I be? Mixed. There’s no guaranteed effective treatment for PoTS, and of course, I am unsure how severe/chronic I am / am going to be.

I must add that I do not meet diagnostic criteria for M.E./CFS.  I am very happy about this. (I did meet them 1998 – 2002). This means I will not be able to be recruited in the ME/cFS genetic study that I was working on from Sept 2021.

2022 is a write off for me; the next three months are also expected to be a write-off, but I hope that they will be stabilizing, and something to maybe build on, following the complete collapse of my life in the first 3 months of 2022, the most awful of years (1998, 1999, & 2000 were objectively worse, however). 

 

Why didn’t I just stop running from mid-October? People with chronic disease often torture themselves for years over the mistakes that seemed so small at the time, but had the most enormous consequences. I could walk the Pentlands with Liz in December: (12km! Incredible views…); I climbed at Ratho & Eden Rock; I went to a shopping centre.  All those things are now denied to me – 3 months & counting.   I am so, so upset.  But there is no way back. Only forward. And I’m scared I’ll only get a small portion of my “old life” back.  

 

But if I do, I will not try to scale the heights I reached in 2021, not this year. Maybe not ever. Health trumps everything. 

Monitoring Heart Rate & HRV every morning is a new way to objectively record how I'm "doing".

On a "good" day - topping up the hot tub. Hot baths aren't recommended for PoTS. Sod that. 

Using a no-resistance sit-pedaller (I prefer not to sit up due to orthostatic intolerance), and a HRM, note compression socks to aid circulation. 

April 2nd. Literally driven to the floor on the kitchen (I had been preparing lunch) by a heart rate of 110+.  At this level, my CFS symptoms are going to be affected/triggered, and so my body is actually damaging itself by it's autonomic nervous system overreacting. Vicious circle. 

NASA Lean test results.  This clearly shows an inappropriate rise of over 30 bpm on standing of my heart rate, which does not resolve and in fact gets worse. This is PoTS - Postural Orthostatic Tachycardia Syndrome. 

"Does Philip have M.E.?" - no; I barely scrape/fail the lame "Fukuda" criteria for "CFS". 

Heart Rate - damage done on January 1st at the Vogrie Parkrun - check out the last two kilometres: given my max HR is 177 (and no, that's *more* than the old "220 - age" adage), I am surprised I actually didn't end up in A&E .....

 

 Blog Post drafted February/March 2021. 

My name is Phil Murray. I’m 56. I consider myself to be lean, fit, active, and with a great zest for life. My interests include long distance running, orienteering, rock climbing, hillwalking, and I am a guitar player & have played many live gigs in various bands.

But I have a problem with increased fitness and recovery/health, which, as I get even fitter, and “stronger”, becomes even more glaring  ….

Winning the "OK Nuts" Trophy, Vet Men 45+, April 2021, Surrey

WHERE AEROBIC FITNESS MEETS CHRONIC FATIGUING ILLNESS

I was a sporty young man. As a youth, I regularly ran for my school / college / university in running races. I got better, and at university became notably fast, and successful at orienteering as well.

By the time I was 25, I had won a few races, and had fast pbs at many distances, including 31:58 for 10km, 72:38 for the half marathon, and, on the track, had even won the South Yorkshire 5000m title in 15:26 (admittedly against a mediocre field).  

At orienteering, my progress was even better – at 19, I had run for Great Britain in Europe, and was in the Junior Squad for my final years U20.  At the age of 16, I had even won a 2-day (Junior) mountain navigation endurance race. Endurance was me!

But all this came to a crashing halt in my early 30s, when, having been over-committed to work (in particular, a commute), sport, music & everything for over six months, I was felled by a savage sore throat virus.  To my dismay, not only did I fail to recover from the virus within a week or two, but I was unable to function – crushing fatigue; “brain fog”, racing heart, insomnia, rashes, appalling indigestion, the list is long.  On the very rare occasions I had a “good” day, I would do something trivial, eg. get a haircut (30 minutes), then spend the next week bedridden with crushing symptoms all flaring up.  My exertion tolerance was non-existent; my “post exertional malaise” was savage, and punishing, and it was torture.  I lost the lot. Yes, all of it. I was, for a time, bedridden & requiring care.  

Within 6 months I had a diagnosis of Chronic Fatigue Syndrome, or “Postviral Fatigue syndrome”. This is now usually referred to as “ME/CFS”, and it was a long, tortuous six years to any sort of recovery. There were many crashes, which I won’t go into here, but as I did more (having felt improvements from rest & pacing), sometimes I would pay a very heavy price. But slowly ... bumpily … I crept back into life.

By 40, I was back in an office, doing a sedentary job, full time, and slowly starting to pick up sports. Easy climbs. Walks. Steady jogging. Mountain hikes. Some of these left me worn out, but I was bouncing back quicker.  A 5km race (18:36! 1^st Vet40!) in 2006 age 42 put me off work sick for 2 weeks – lesson learned (my employer’s Doctor was a non-believer in ME – he was a utter disgrace for whom I have nothing but contempt).

So, a slow process of getting back into my passions began – climbing, in particular, not being aerobically as challenging, I engaged with a lot. My hugely enthusiastic attitude meant I threw myself into this with gusto. Running became more & more enjoyable. I got faster. Fitter. Stronger. As a Veteran, I started competing in orienteering races again – quickly getting better. My first actual running race, in 2013, a 10km, I was gobsmacked to be in the top 3 Vet 40’s and 6^th overall. Wow!  (Won a bottle of red wine!). Shortly after, I won a pair of racing shoes worth £80 in another race. I was back!

By 2017, I was nearly at the top of my age group at National orienteering level. By 2019, as an over-55, I suddenly found myself on the podium in European competitions, and ran for England (winning the individual race) in a Home international.  People muttered about how fast I was running. I didn’t feel 55, and it’s true, I felt I could run really fast!  

Cue a misplaced 10km time trial in May 2020. Lockdown boredom - we’ve all been there.  Four years earlier, aged 51, I’d managed a very pleasing 36:44 in a local road race, so I merely wanted to try to run it in less than 40 mins. I did this – 39:56. But something felt wrong.  I couldn’t recover. In fact, within 7 hours, my old CFS symptoms were back – brain fog, excessive fatigue, irritability, listlessness (but not the more extreme symptoms). My housemate said, & I quote, “it’s like you’re a different person”.  I felt GHASTLY. This went on, AND ON, for six miserable, but not extreme, weeks.

Finally, after several false starts, the relapse faded away, and off to Europe I went, again placing on the podium in a big European orienteering competition, 1^st Brit home.  May was just a blip, right? I spent the late summer & early autumn on numerous domestic climbing trips, with runs slotted in, and the climbing was awesome, I felt fit, and I sneaked in a 67:40 10 miles time-trial on a rainy Sunday having watched the London Marathon on TV as a motivator (and that worked!).

Since then, my fitness has been going up & up. I feel great when I run. I want to run fast. I *do* run fast (for a 56 year old!).  Yet – and here is my issue – I’m not recovering from the harder runs consistently, or well.  Like, I need painkillers to sleep, and sedatives.  The next day, I feel like my head is full of cotton wool, & everything’s a problem.  If all’s well, I’ll be fine the next day.  But sometimes, I’m not.  Sometimes, 48 hours later, I feel ghastly again. And this stays for 2 to 4 days, destroying my activities planned for that period. Those familiar with ME/CFS term this “post exertional malaise”. It’s a dreaded, defining, and horribly cardinal symptom of the condition. Yet…. How can I possibly have ME/CFS?  I raced for England 18 months ago, for heaven’s sake!  No one with ME/CFS does such things – it’s a crippling, long term, real, serious, life-destroying physical condition.

Is it possible that I still harbour a very low-level disorder of the ME/CFS family, ie. it never *fully* went away (for example, the one thing that always made me sick again in the past 10 years was high altitude mountaineering – and I mean sick; I would be unwell for up to 2 weeks after climbing an modest Alp). (Ruining everyone else’s holiday in the process). (“Don’t give up on your dreams!” – I have).

So what do I do? Just go “jogging”?  I could. Then I’d feel well (if a little bored) (and with unfulfilled goals). But I have an appetite for fast running, and racing. I love it. And when I am having a good day, running fast is a wonderful thing.  I even embrace the pain involved.  The problem is…. what happens tomorrow?  

 

(note: I also have an atypical Type 2 diabetes diagnosis, and am on Metformin. I am a lifelong non smoker, enjoy a social drink, and have always been tall & lean/ “thin” / very low body fat).

 ……………………….

(incidentally, there are no psychological explanations that could be attributed to my situation. And as I know this, I won’t give any credence to any suggestions that there might be, either).