Most people’s idea of fun summer reading probably does not include exploring a person’s experience of chronic fatigue syndrome (ME/CFS). Mine apparently does – I blew through Michael Gallagher’s memoir of ME/CFS “Run Down: An Endurance Athlete’s Race Against Chronic Fatigue” in record time. Following another person’s, step-by-step entry into ME/CFS was actually exciting and validating plus it opened my eyes to the different versions of ME/CFS that are surely all around us.
Finishing the Ironman World Championships in 2007 (from Gallagher’s website).
Gallagher also provides a valuable service by couching his ME/CFS story inside his personal story. in the first half of the book, we learn how he grew up, what his family and friends are like and how he chose his career path. This proves compelling as we see Gallagher – an avid athlete – descend into a serious case of ME/CFS. It also helps to illuminate a second significant theme of the book – the astonishing costs that addiction even in Gallagher’s relatively well-off circle of family and friends – can play.
Exercise – in all its themes – as an enjoyable and health-enhancing activity, as an opportunity to test oneself, as a competitive endeavor, and as an opportunity to bond with like-minded others – permeates Gallagher’s story. Much of Gallaghers ME/CFS story revolves around his attempts to somehow retain this core activity in his life.
Gallagher discovered exercise in the form of running and mountain biking at Colorado State University in Boulder, Colorado. He was basically living the life – skiing, running, biking, partying, and occasionally trying out the latest psychedelics while managing to hold down good grades. While studying for a Master’s Degree at Chapel Hill in North Carolina, he recognized that running sharpened his mind and strengthened him – two attributes that would serve him in his training to become a doctor.
Gallagher made it through medical school, and somehow survived a two-year sleep-deprived, torture chamber called residency that seemed more like Navy Seals training than anything else. He also met his future wife, and trained to become an orthopedic surgeon at Northwestern University.
He also really began running. Not jogging, not working out – but serious running – marathon type running. From there it was natural, if not a big step, to doing Ironmans – a 112-mile bike ride followed by a 2.4-mile swim and to finish it off, a 26-mile marathon. Gallagher was in seriously good shape. Not that he didn’t have some mysterious problems – there was the cough that wouldn’t go away for quite a while and stomach pain that almost derailed his Kona Ironman – but those were minor blips on an upward path.
Next came a stint as a team doctor for the New England Patriots, the birth of his son, a short stint in Rhode Island, and then back to Colorado. With almost 50% of the book done, life is good: he’s got a good marriage, fulfilling work, and a son; he’s living in a great spot and has plenty of opportunities to engage in one of his great passions – testing himself physically.
Then came the Badlands biking trip. Gallagher surely didn’t know at the time that Coxsackie virus had been shown to trigger ME/CFS in 5-10% of those infected – he probably didn’t even know what ME/CS was – and if he probably wouldn’t have cared. By this point he was an Ironman. He’d tortured his body in ways few of us have experienced and came out the better for it. He’d pushed it through colds, stomach bugs, injuries etc. Rain or shine, healthy or not, he maintained his fitness. What was a little bug to him?
With his buddies on the fateful 2014 Badlands trip (from Gallagher’s website)
By the end of his pretty mild (for him) five-day bicycling trip with his buddies, it was clear something was wrong. For one, he’d had to sit out a whole day and by the end of it was exhausted. That wasn’t him at all; in fact, he “sensed a seismic shift” in his well-being had occurred. He had no idea…
It’s here that Gallagher’s story gets interesting in more ways than one. it’s not just that this supremely fit individual gets ill – and really ill – it’s how it happens. Some doctor recently said something to the effect of “every case of long COVID is the same – until you met the next patient – and so it is with Gallagher. Everyone with this disease can probably see something of their experience in his but his experience is also different – in its extended manifestation, in its many ups and downs, and its different symptom course.
Gallagner’s able to track his illness to a specific infectious event – the Coxsackie infection – but his course into ME/CFS is different. In retrospect, he obviously has it, but for several years he doesn’t meet the case definition.
He rests and then tries a shorty – a 5-mile run – that doesn’t go so well. Neither does the 3-mile run afterward. he follows a doctor’s orders – no running for 3 months – and takes up the slack by taking up weightlifting. Another echocardiogram at the end of three months is fine and he’s pronounced healthy. Except now he can only manage 30 miles running over a week (compared to his usual 80 miles).
Looking for help he gets his first exposure to the sometimes maddeningly illogical and dense medical world. Tossing logic into the waste bin, his primary care doctor proposes that he’s just getting older. Somehow in 3 months he’s aged at a record rate. At 41 years of age, his big running days are behind him.
Note, though, that at this point he’s probably in better physical shape than 95% of his peers. He’s still lifting weights and at times can run OK for weeks but always at some point falls apart and has to stop. Then in the fall of 2015, feeling strong, he tries a longer run and gets hit hard, and has to give up exercise for a month.
Tacking a new tack, he tries a slow 13-mile run in Feb 2016 – and does fine! Now he’s got it – he just needs to run really slowly and go on long, slow bike rides – and it works. Soon he’s up to 2-3 hour trail runs and loving them. He’s also waking up at 5 am and biking for an hour and fifteen minutes every morning before work. He’s so jazzed that he splurges on a $6,000 bike.
Back in shape in 2017 (“before it all went to shit”)
Feeling that he’s back to normal, he does what he’s always done – he finds a bigger test – an ultramarathon. Twenty miles in, he’s rolling – feeling great. He soon hits the wall but through sheer willpower manages to finish. He’s surely cured now. How could he not be? He’s just successfully finished an ultramarathon.
In the next step in his ever-evolving quest to explore his physicality he takes on a high-intensity interval training program called Crossfit – which leaves him feeling stronger than ever. He posts his fastest 1-mile time and a personal best 10K run. In October 2016, he runs the fastest half-marathon of his life. His illness has become a distant memory.
But then out of the blue, the exhaustion comes back. This time, there’s no warning – no new infection to trigger anything – he just slowly gets worse and worse and worse. Instead of doing ultramarathon he’s now looking for places to sit down at work. After a couple of months off, feeling better, he returns to what he knows – Crossfit – and it works again. By February, he’s running again and signs up for the 2018 Boulder 10K. He finishes – but with a poor time, and then after a rough Crossfit session has to abandon that as well.
Ignoring the on and off-again feelings of malaise, back to the long, slow-intensity running and biking session he goes – but rolls his ankle – putting his foot in a boot. Now he’s in trouble – how to exercise now? Where there’s a will, there’s a way, and he certainly had a will – he takes up stationary biking and swimming – and does more or less fine – which at this point means he’s able to handle the malaise and ill feelings that have become a more or less constant companion.
The ‘demon”, though, has been gathering strength. After an interval workout one Saturday, he feels so sick that he can barely keep from shaking. Aerobic exercise is now completely out of the question. Short weightlifting stints are in. Several months later, an attempt at a shorty – a 2-mile run – utterly wipes him out.
Gallagher has put up a tremendous fight to maintain some kind of exercise regimen. He’s changed his workout patterns (fast to slow) and his type of workouts (weightlifting, Crossfit, swimming). In retrospect, you can see a more or less steady diminishment over time, interrupted for sure by rebounds. Those rebounds are about to end, however. His body has hit its limit. There will be no more major recoveries.
Even housework is becoming limited as Gallagher is now saving his energy for one thing that really, really matters – his livelihood. The head of his surgical department and soon to become a regional chief, whatever his problems with exercise, Gallagher has been clearly rolling at work. He can still handle 12-hour days but now his often quite physically demanding orthopedic surgeries are leaving him exhausted.
About six years into his illness, with exercise becoming a distant memory and work problems starting to crop up, Gallagher turns more and more to the medical profession for help. A Sports Medicine ultrasound of his muscles indicates that he has overtraining syndrome, but a diagnosis is all they can offer. Trips to an endocrinologists and neurologist are unhelpful. Interestingly, chronic fatigue syndrome (ME/CFS) is not on his immediate radar, as he reports that at this point he “definitely did not meet the strict diagnostic criteria” (!).
Gallagher’s case, of course, raises the question – when does ME/CFS really start? Gallagher clearly has at least an incipient form of ME/CFS for many years. Long before he meets the criteria it’s going dramatically impact his ability to exercise. Most of the symptoms seem to be there: he has PEM, fatigue, is not sleeping well, and is starting to have problems standing but cognitively, he’s clearly still as sharp as ever.
Gallagher later reports that he’s confident that plenty of people probably have a similar, rather prolonged onset to this diseases – and wonders how much better off he would have been if he’d been diagnosed earlier. I would argue that he’s had it since he started having problems exercising; i.e. at the point at which, instead of making him healthier and stronger, physical exertion made him weaker. My guess is that at some point, we’ll have biomarkers that can pick up the point at which exertion becomes pathological. Who knows how many people who just don’t like to exercise actually have a mild form of ME/CFS?
The list of new stressors is growing – he’s becoming alcohol intolerant, sex is making him sick, and lifting something heavy can send him reeling. He’s in touch with Scott Simpson – an award-winning Canadian triathlete and former Ironman participant who came down with HIV/AIDS first – and continued racing – and then got ME/CFS and is now an ME/CFS advocate.
Simpson had had a similar experience – two early remissions sent him charging back into training – only to dramatically and finally relapse. By the time Gallagher talked to him, Scott was having trouble walking short distances but said he was still “healthier than almost every other person with ME that I know…and I know a lot”.
Gallagher begins to consider whether he might have ME/CFS – a thought that nauseates and clearly scares him. Still, as I did in the mid-1990s, and as my partner did 18 years ago, and many of us probably have – he pushes that diagnosis away. Nobody wants to have “that disease” or that nebulous diagnosis.
A functional medicine doctor finds that he has postural orthostatic tachycardia syndrome (POTS), a condition characterized by reduced blood flows to the brain and a racing heart when standing, but the treatments make no difference. When lifestyle and dietary changes, and nutritional supplements fail to move any needles on his health, his functional MD doctor recommends that he abandon the supplements. Close attention to just about everything – the foods he eats, his sleep, his activity levels – and cutting out caffeine, and dairy products – reveals nothing. The one constant – the one factoid he can rely on – is that physical activity makes him worse.
Suffering – 2020
Eventually, and seemingly inevitably, the last major straw breaks – and Gallagher has to give up work. Lying in bed in agony. he continues to descend into a unique kind of ME/CFS hell. Now he’s bothered by lights and sounds and becomes cold intolerant. A 20-minute phone conversation can put him in bed for the rest of the day.
The former ultramarathoner becomes wheelchair-bound Now fully immersed in the ME/CFS world, he’s astonished at the range of stories he finds on sites like Phoenix Rising. An IVIG trial goes wrong at first, but some weeks later he feels a bit better. A surprise weekend phone call from Dr. Hector Bonilla from Stanford confirms he has ME/CFS. Bonilla recommends that he drop the supplements and try low-dose naltrexone (LDN).
Gallagher, a doctor, still has something to learn about the medical profession and ME/CFS. Despite being warned about the Mayo Clinic and ME/CFS, he makes the trip to get access to their reportedly excellent dysautonomia section – a condition he’s been diagnosed with.
It’s pretty much a disaster. After reluctantly agreeing to a treadmill test so that he can get assessed by a cardiologist, he’s shuffled into an exercise physiologist who tells him that he’s deconditioned and needs to exercise more. The fact that he’d been a marathoner, that he loved to exercise, that he wanted above all else to get back to exercise, that he’d made himself much sicker doing that – all that was apparently gibberish to this doctor, who had his own set diagnosis for people with ME/CFS – you’re deconditioned and you need to exercise.
Gallagher had come to the vaunted Mayo clinic hoping for a deep, creative, and thorough dive into his medical situation. Instead, he’d gotten a shoebox approach that mostly duplicated his prior testing, administered by a hack physician. Disgusted, he left early.
(The Rochester Mayo Clinic does appear to be changing its ways. Gallagher noted that a couple of months ago they removed the graded exercise recommendations from their website, and MEAction recently reported that they’d reached out to them to help them revise their ME/CFS protocols.)
By this point, the constant illness, the physical debilitation, the uncertainty, the fear, the lack of progress, and the lack of help from the medical profession had all become all too much – even for him. The pillar of strength – the guy who’d been there for his family and friends when they needed help, the award-winning regional chief and department head, the ultramarathoner participant who pushed his way through almost unimaginable physical stress and pain – was gone. In a poignant and important part of the memoir, Gallagher acknowledges that he’s been broken. He’s become “bankrupted mentally” and “folds”.
Deeply depressed, he contemplates suicide – even going so far as to envision different scenarios. Withouit his wife, who doesn’t seem daunted by his illness and, in fact, enjoys helping him out, one wonders what would have happened.
Even in his distress, he recognizes that it could be worse. By the time he became ill, he had a successful career, a wife, and kids who’d mostly grown up around a healthy dad.
That made me think. What if I’d gotten whacked by ME/CFS when I was forty, as Gallagher did, instead of twenty? What professional and other relationships would I have nurtured? How different would my financial situation be? What would if I’d gotten ME/CFS as a teen?
Michael Gallagher MD today (from his website)
Gallagher recognizes that pacing is critical and over the next summer – he doesn’t really explain how (and may not know) things start to improve a bit. By fall, with his disability running out, he gives part-time work a try and it mostly works. He does a courageous thing and outs himself to his partners with a letter explaining everything – his strange illness p, his ME/CFS diagnosis, etc.
He makes his trepidation about doing so clear in his letter.
“Many have asked me not just how I am feeling, but what my diagnosis is. I addressed this briefly at one of our Rock Creek meetings this summer explaining that I have Dysautonomia. I gave a cursory answer at a time when I was still grappling with the diagnosis itself.
The fact of the matter is that I have chronic fatigue syndrome (aka myalgic encephalomyelitis; ME/CFS), which includes many signs and symptoms, one of which for me and many others is dysautonomia. I have been reluctant to tell anyone other than those close to me this because, frankly, there is a stigma attached to those words. Worst of all, the stigma is at its ugliest within the medical community itself, particularly amongst physicians, perhaps most so among surgeons.
It has been an incredibly difficult diagnosis to come to grips with. It has not only made me sick, changed my life dramatically and stolen many things that I love, but it has also caused me angst having to explain to people what is wrong with me or hide my diagnosis. Well, I have come to realize that there is no shame in being sick. I have a chronic illness, just the same as someone with Lupus or Sarcoidosis or Glomerulonephritis does. I didn’t ask for this illness or get it because I was mentally or physically weak. I got it from a virus, much the same way that the majority of ME/CFS patients do.
The letter goes over well and he ends up sending it to several hundred primary care doctors and posts pieces on Medium (“Mountain Biking, Marathons, Orthopedic Surgery, and Chronic Fatigue in the Time of the COVID-19” and “A Year of Turmoil and One of Redemption“) on Facebook.
He’s fully “out” and it works. Old friends and colleagues get in touch, including one who has his illness as well. After that, he writes this book.
By the end of the book, which was published this year, Gallagher reported he was still working part-time, is being careful with his workload, and had not had to use a wheelchair since the summer before. Some silver linings have shown up. His goals for his future (biking around Europe, doing the granddaddy of ultramarathons in South Africa) were, as he put it, “crushed by the illness,” but he no longer feels chained by them. He’s done with ruminating about what he’s lost and worrying about the future. It’s not that he’s given up hope for the future – he still regularly dreams about running – but he’s more focused on the present. He has a greater appreciation of what he has, and he’s a better, more communicative partner with his wife.
With long COVID in the news, Gallagher has written a timely memoir – and you couldn’t ask for a better messenger. Gallagher breaks just about every stereotype that’s been unfairly foisted upon ME/CFS. He’s male, he was in great shape, he was a professional at the top of a demanding profession – in medicine no less – had a happy family life and quite a future ahead of him.
People with ME/CFS and long COVID can read his memoir and empathize and feel validated and be intrigued by the questions Gallagher raises about the nature of ME/CFS and when it begins. Those outside the illness will be struck by the harrowing journey that Gallagher and his family get taken on.
Cort,
This is really interesting. It seems like there are experiences with ME/CFS that are typical in terms of the trigger (e.g. virus), types of symptoms (e.g. PEM), experiences with the medical profession (e.g. bouncing around, no answers) and symptom management techniques (i.e. pacing), but atypical in terms of the functioning of the individual.
Similarly to Michael, in my neck of the woods, Alastair Lynch’s (former professional Australian Rules Football player) experience was that pacing delivered results. However, that pacing isn’t what is considered “normal” for ME/CFS.
https://www.youtube.com/watch?v=Rvtpwq37yRQ
Why I find this so intriguing is how these reported phenomena could possibly be explained by any current ME/CFS aetiology theories? How could the same disease that puts Whitney Dafoe on a PICC line for years allow someone else to complete an ultramarathon, or play professional football? Some, perhaps many, will say that it isn’t the same disease at play – that is one option. But what if that isn’t the case?
People with a broken leg experience pretty much exactly the same symptoms. If you go jogging on a broken leg, you can’t, not even for a little while. So it is difficult to understand how with ME/CFS, some people can do an ultramarathon (not doing them any favours obviously) whilst others haven’t been able to talk for years. Where is the theory that explains how the hell that can be possible from the same disease? Until a theory can encapsulate all of those diverse experiences, how likely is it that the theory is correct?
I think of cancer staging systems. For that horrible disease, stages 0 to 4 are used to explain how the pathogenesis progresses from no detectible symptoms through to death. One could not imagine a broader range of symptoms for a single aetiology, yet there is a system to explain it. The staging system for ME/CFS, as a concept, seems to be missing.
And as you state, when are we going to get biological markers for when exertion becomes pathogenic? Is that all people with manageable (e.g. mild or moderate) ME/CFS need to stop getting worse – i.e. avoid pathogenic exertion? Or maybe even to get better? Howe would it help those with severe ME/CFS?
By the way, those are semi-rhetorical questions – I’m not expecting anyone to answer them.
I was left with similar thoughts after reading the article, how can this disease have such a range? But I think it can, and many can. To your broken leg comment—my Mom broke her leg and didn’t notice. Took herself on a roadtrip and finally got x-rayed when “PT” didn’t work. It was broken in multiple places but she only ever felt muscle strain. If I had broken my leg like that I’d be screaming!
I also think ME/CFS is just an end state of a body desperately trying to cope with … something. That something may be structural, viral, environmental…and the issue and the difference may drive the coping mechanism, so it shows up differently for different people.
Hello,
He tells us that he took LDN, low dose naltrexone. But did it help? I’d like to know.
Thanks, Frank
Very interesting story! Re: the range of illness, it seems that both Michael Gallagher and a few people commenting here indicate they had more success with the pacing technique when their ME was less severe.
I think pacing is essential to ME management at any illness severity (e.g. even bedbound patients who are at complete rest most of the time typically require some minimal & passive range of motion exercises & can pace even these — although crucially, pacing in these very severe patients likely could not lead to symptom eradication, but only potentially mitigate their exacerbation).
But this greater success at lower severity makes me think it would be helpful for researchers studying pacing to use the *Functional Capacity Scale (an appendix in the IACFS/ME Primer) to classify patients and then see if there is a positive correlation here (pacing success & less severe functional capacity) & the significance of such a correlation as it might apply to both clinical care & pathogenesis.
*here is a link to the IACFS/ME Primer: https://growthzonesitesprod.azureedge.net/wp-content/uploads/sites/1869/2020/10/Primer_Post_2014_conference.pdf
Re the ranges, & your question as to how someone with this could still run so far, the ICC states that a 50% reduction in function is required for DX, & that for someone who was very athletic prior to getting ME, 50% of their original function will still be a lot more functional ability than that of someone who was a couch potato before getting sick (obviously I am paraphrasing, but you get the pt).
I was also a very fit & healthy marathon runner & triathlete (& in grad school, working, & doing a lot more) prior to getting ME, & in the early stages of my illness, I continued to run, swim, bike, etc……the training & the actual races were way different than they had been when I was healthy, & incredibly harder, even though I was doing much less, (& I would crash terribly afterward, unable to do anything)……. & the ultimate impact of doing that stuff was to make me much, much more severely ill, but at the pt in my illness, when I did manage that much, I most definitely fit any of the ME definitions out there (inc the ICC & the Canadian Consensus, etc).
And, my Drs were encouraging me to cont with what I was doing. Had I known the impact, maybe I could have stopped & actually gotten better. Instead I am now homebound, mostly bedbound, unable to manage all my ADLs, & very, very ill. I also never got any remissions; just continually progressed to more & more ill. (I also gained more illnesses along with ME as things progressed.)
Oh, and a PS to Cort, the bike portion of an Ironman is 112 miles; not 140. (not being picky, just something that tends to bug those of use who are or were extreme distance athletes)
Thanks, Tammie – 50% reduction in activity levels – I think that’s the key.
I got sick, seemed to fully recover over the summer – and then got knocked for a loop the next fall and winter – so I had one seeming full return to health. Nothing more after that.
I fixed the Ironman distances – @140 miles overall, not just for the bike ride – not that I would know. ME/CFS knocked me out of an athletic competitions around 1980 – just a couple of years after the first Ironman. If not for that – who knows? 🙂
Cort, thanks for the correction. : ) And, I’m sorry that you also lost athletic ability to this awful illness.
Tammie,
For sure it makes sense as a % reduction – I’m not questioning at all the “doing” of the task, nor the concept of relative capacity (to baseline). It is more that current theories don’t seem to have a way to explain how the dysfunction progresses. No surprises there though – no one said this stuff was easy, well funded or non-stigmatized.
As well as not explaining ME/CFS disease progression, I believe a lack of something like a staging system is part of the bias against ME/CFS in the medical profession. Easily arguable, the other contributing factors being heartlessness, ignorance, hubris, professional cowardice, hypocrisy and intellectual squalor – but moving right along…
One of the perspectives I’ve heard offered about why so many doctors give ME/CFS a hard time is basically selection bias. To make it to through the process of becoming a doctor/consultant/surgeon, very few with a predisposition towards ME/CFS (congenital, we assume) survive that process. When doctors look around at their peers, they see very few with ME/CFS. They were probably “weeded out” (excuse the expression) along the way and forgotten about (e.g. when they couldn’t keep up with 24 hour intern shifts or whatever). Likewise, I assume there are probably less ME/CFS sufferers per population in special forces or ultramarathon populations than the general population.
My point is, if doctors are going to “appreciate” ME/CFS it is going to have to be an intellectual grasp, based on a very solid theoretical framework of the disease, including its progression (with evidence, obviously). It is not going to be from their life experience (although Covid-19 might have changed that a bit). Altitude sickness would probably never have been a hot topic in research amongst Sherpa doctors. However, the mitochondrial and cardiovascular evidence and theoretical framework explaining the phenomenon is undeniable.
Lono,
I absolutely agree with your reply to my comments……add in greed as another reason this has been neglected, but yeah, you’re definitely rt as to what you wrote.
I wonder if the different types of Multiple Sclerosis might give us a window into the variations in ME. The relapses in the relapsing-remitting type of MS are thought to be due to inflammation. While the progressive decline in progressive MS is due to nerve damage.
My reading says we do not know what the root cause/s of progression of ME
That’s a great video!
At one point I wondered if he did Toby’s program 😅
I hope people can listen to it carefully, and take in the message, whatever their particular situation / age / time sick / etc.
With all due respect, HIV is still an exclusion to me/cfs diagnosis.
Is that untreated HIV or treated HIV? Scot apparently did well enough with his HIV treatments to be able to return to competition. He wasn’t so lucky with ME/CFS.
It does bring up the question “if you have “x” can you have ME/CFS as well? For instance, you can have RA and have fibromyalgia at the same time and its pretty easy to distinguish the two. My guess is that the melange of symptoms that describe ME/CFS – PEM, cognitive problems, unrefreshing sleep, orthostatic problems (does anyone not have trouble standing for awhile?) are distinct enough that whatever else you have, you can usually distinguish if you have “ME/CFS’ as well.
Of course, there are mimics. It’ll be interesting to see what Nath tells about the “ME/CFS” patients who got kicked out of the intramural study when further testing found that they had something else.
Good point. Usually it’s the other way around. You come up with complaints that match ME/CFS and other diseases. Then the doctor excludes all other diseases. I know that some HIV patients also have chronic complaints even with the use of medication. Very complex. I don’t think PEM is unique by definition either. Many other diseases also have worsening symptoms after exercise. But in ME/CFS it is often extreme. I personally think that the moment PEM strikes ME because we function on adrenaline and stress hormones. If these disappear or become lower, PEM occurs. Partly because the immune system is no longer suppressed and the body has to clean up everything (infections, EBV, etc…). I look forward to Nath’s study.
About criteria, I want to say the following:
1) I am a gradual onset case myself. In gradual onset cases with gradual deterioration over time, in my opinion it can take years until ME/CFS criteria develop fully. Even so, symptoms can change over time; for example while in the beginning short-term PEM (immediate pain attacks after exercise) as well as sometimes constant pain was notable, these days for me the focus is more on other symptoms and long-term deterioration after overexertion. With the caveat “as far as I can remember after 10 yrs+”, classic next-day PEM developed in the course of the illness. I also remember someone reporting on Twitter they started out with fatigue and went on to develop classic PEM.
2) Strict criteria are highly necessary in ME/CFS research to ensure validity of results, in order to make a 100% sure no other conditions are mistakingly included in the study.
3) From a diagnosing of patients perspective, however, the objective is actually somewhat different from research: it is to also allow for a suspected diagnosis of ME/CFS (i.e. with certainty < 100%) to make sure patients get appropriate help, even if not all criteria are met: There is a reason why CDC or NICE criteria have not adopted Canadian (CCC) or International Consensus Criteria (ICC), but focussed on only 3 or 4 core symptoms including cardinal symptom PEM. My opinion is that as there are individual differences in patients, and in particular in graded onset cases the full picture may only emerge over time, there are ME/CFS patients that happen to not fulfill strict criteria. For example, I never really had classic POTS.
Also, just the way the same symptoms are randomly grouped together, or how specifically they are described in ICC vs. CCC can make a patient fulfill one set, and not the other: For example, I fulfill CCC but not strictly ICC, because I've never really had classic POTS and this happens to be grouped together differently in ICC; and because ICC have so very specifically worded (and sometimes even to be measured) examples of bodily dysfunction that strictly they don't include similar symptoms that go in the same direction.
To illustrate this: So here I am, having started out mild and now housebound at the beginning of severe spectrum, so disabled that I've lost independence but without support, with (among other symptoms) severe hypersensitivities, unable to reach doctors due to mobility issues, could not walk to the supermarket that's only 5 minutes away, practically unable to make online purchases due to specific cognitive impairments, clear PEM-related deterioration over time, a toxically fatigued feeling in my body, a gait disturbance that makes me unable to go for a walk, at times not showering for weeks but just washing myself up because standing in the shower is overexhausiing. But I don't strictly fulfill ICC.
This is why I think it is important to keep in mind that there are two slightly different objectives to applying criteria in research versus in a doctor's daily practice. Thinking about criteria, I've come to the brief conclusion:
Fulfilling ICC or CCC means you've got ME/CFS with a high degree of certainty . Not fulfilling ICC or CCC does not mean you don't have ME/CFS.
https://www.cdc.gov/me-cfs/healthcare-providers/diagnosis/other-conditions.html
I really hope you are not posting this link to imply I would not have ME/CFS, but just as a helpful reminder for anyone to do good differential diagnostics. I’d add Myasthenia gravis to the list.
I did not mean that doctors should quickly fall back to an ME/CFS diagnosis without doing proper differential diagnostics, but that doctors or disability insurance shouldn’t argue that “You’ve got PEM and it overall looks like ME/CFS, but I’m denying you help because you’re technically missing out on criterion xyz, bad luck”.
(I score high on all ICC PEM and neurocognitive criteria (cognitive impairment, pain, sleep disturbance, neurosensory/perceptual/motor disturbances). It’s for example the three out of five criterion on “Immune, gastro-intestinal and genitourinary impairments” that needs a bit of some squinting for me to fulfil. Also, some new symptoms like air hunger or tender lymph nodes only set in 10 yrs into the illness after Covid vaccination.) I think that developers of clinical criteria can always only try to capture a complex illness as best they can, so there will always be some patients that slightly deviate. Thinking about it, the fact alone that the criteria require “x out of y” is an indication of possible differences between patients.
I think the point I’m making is that even if not all criteria are fulfilled yet (they possibly aren’t also in mild cases), it can make sense for doctors to not rule out a diagnosis for ME/CFS so that appropriate measures like Pacing can be taken early on to prevent further deterioration of the illness.
No JR i won’t imply that. I wanted to show how complex this disease is. I wish you the best!
Thank you Gijs :-), I wish you the best too!
Interesting point, I hadn’t thought of it like this
Good point. I really like the focus on the cardinal symptoms. I have some memory of Gallagher stating that he didn’t fulfill the strict criteria or something like that. I wonder which criteria he was looking at.
For me I think PEM is the standout symptom. I had experienced fatigue when healthy, I had probably experienced poor sleep (its been awhile – I can’t really remember), I had experienced pain and I had even experienced aching muscles the day after an intense workout but I had never experienced the kind of complete slam – the extraordinary and very different muscle pain, the immense fatigue, the problems with coordination and speaking and thinking, the problems standing – that PEM produces in ME/CFS. That was an eye-opener for me. That was unique in my experience.
That’s why I’ve always thought that the way to really get a handle on ME/CFS is have someone really exert themselves and study EVERYTHING possible over the next c,ouple of days. I’m still kind of astonished that that’s hasn’t been done long ago. It may have been done, though to good extent, in Nath’s intramural study. I’m really looking forward to the results.
Yes, plus they should study everything during the pushing part! 🙂 It never ceases to amaze my why ME/CFS patients CAN push themselves over limits on willpower and adrenaline etc., what happens metabolically during pushing, and how it relates to the subsequent crash.
We all have our own versions of the hell-that-is-ME/CFS story. There is some irony that it takes “doctors” to get the profession to start to pay attention. As another former athlete (though not Ironman-level), I understand the special hell Dr. Gallagher describes, so I both sympathize hugely and am grateful for his book. I’m not sure I have the guts to try to read the whole thing, but hope others can.
It is a harrowing story. The ending though is pretty good. While he’s nowhere near where he was – he’s pretty functional – he’s back at work at least part-time and was able to write the book. Basically, he’s out of the abyss. I’m not exactly sure how he got there – but things are definitely looking up.
First I LOVED his book, I am so happy to see you have written about it, Thank you. I too had hoped he would have mentioned more about his recovery process, like did the LDN help? What else does he think helped him get back to working a few days a week. I have noticed that in a lot of M/E/CFS recovery stories, there is either little details about how one recovers ( lot’s of guesses & theories) but no actual facts. It makes me wonder, if no one know’s how or why our illness varies so much from person to person or even how it changes soo much within ourselves, maybe no one actually knows how they recover, they just do.
In my 19 yrs w/ M/E/CFS, ( dx only last yr) I had one really good yr, 2019 so of course I over did it, no one told me not to. I did not want to believe I had M/E CFS so I reconnected with friends, vacationed, etc.etc. until I crashed from it all in June of 2020. I am now mostly housebound. I am in awe of how sick we can become AND how we can recover. Both are mysteries to me that I hope some day will be answered. Thank you for ALL YOU DO.
Thank you for “outing” your diagnosis and story Dr Gallagher. (And thank you for covering it Cort.) I’m in a family with several physicians. I kept my diagnosis secret for many years, anticipating trouble. When I went on disability and my secret was out they told other family members I had an “emotional medical condition”. Of course the non-doctors believe the expert doctors and I’m left alone, without support or compassion.
I think stories like Dr Gallagher”s (their own kind) plus medical studies will nudge middle aged and older physicians toward acceptance. Nothing less.
Let’s hope! The book is definitely getting around -it’s got 94 ratings. Any doctor with enough interest or guts to read it, is going, I bet, to have his/her mind altered. It was really good to see the Mayo Clinic – a big bugaboo in Gallagher’s book and in the ME/CFS community – reach out to MEAction to learn how they can do better. Things are changing and given how credible Gallagher is, his book and his Medium posts are helping that along.
Thank you for your story. I’ve had ME/CFS since I was 32. So 21 years of suffering and hell. The stigma and the medical gaslighting I’ve had to endure is almost as bad as suffering with this illness. The U.S. is so behind, it has left me so depressed. I have lost everything and I know what it’s like to want to die.
Jaime, I understand hiw u feel.
Thank you, Cort, for finding physicians with CFS/ME who share their stories. Not that I ever wished CFS/ME (or a pandemic!) on anyone, but I’m grateful for the unintended positive consequence of physicians now understanding the reality of this ailment.
Your story is very similar to mine.. except I got POTS and also have chronic Lyme (pots is a symptom of Lyme)
Rifing is the only thing that worked for me.. I’m 90% better.. have you tried it? Is there anyone in your area that does rifing? It’s a form of quantum medicine. Best wishes!
I read Michael Gallagher’s book a while back and I was gripped by the sheer extremes throughout. His difficult homelife as a child and then his seemingly endless drive forward and upward throughout his education, medical training and extraordinary physical workouts in preparation for so many gruelling events, that I had no idea even existed.
I think the muddliness of the onset and progression of his illness was agonising to read but maybe that reflects others experience too. I’ll need to read it again, as I’ve now forgotten a fair bit 🙂 but I was ‘on the edge of my seat’ throughout.
And I thought Michael’s wife, Melissa (?) came across as a truly remarkable person!
I fear that stories like his tip us back into the old thinking of “Type A personalities get CFS” as used to be said. His story needs to be told of course, but along with those of us average people with average lives. PS I was incredibly lucky that two close relatives were doctors who believed me and carefully shepherded me through a long diagnosis of exclusion over several months.
I think of it the other way: the “type A” personality is already a manifestation of awry energy processes – i.e driven by stress hormones because your body can’t make the energy it needs from glucose and fats.
Then on the long run, all kinds of degenerative processes will show up, depending on the person . An early aging, of one system or two or three or all.
Would this, early on, be properly called what – hypothyroidism? Malnutrition? And Me/CFS would be… A dramatic turn into a reductive state and ‘hibernation’? Something like that? So a seemingly normal person can also get it after an infection, intense stress to the body, etc.
I was touched by Michael’s story-thank you Cort for writing and publishing this! I wanted to put out there that I have been very much helped by these 2 compounds: Dr. John Chia’s Equilibrant supplement and artesunate. I had to work my way up to 3 + 3 Equilibrant tablets over a month, but it was well worth it. I no longer get the 7-14 day coxsackie activations I used to. I also inject approx 100-120mg of artesunate 2 x a week for 10 weeks as needed. It is a relatively benign antiviral available by Rx in Germany and seems to be effective against CMV and HHV-6. I also take LDN 2.0mg in the AM and 4.5mg at night and 500mg Famvir daily to control EBV. Last I have been giving myself 10mg. IMG IM injections 2 x a week. I am not 100% but at times I am in a boat floating close to it.
While there is no set protocol that works it’s great to hear about protocols that do help at least some people. Thanks for sharing that. I don’t know much about artesunate – I know that Dr. Cheney used it – but I thought it was in supplement form. Interesting! I see that a study just reported that it was more effective than valcyte and valtrex in reducing HHV-6/7 infections in ME/CFS.
We have a little page on it here – https://www.healthrising.org/treating-chronic-fatigue-syndrome/drugs/artesunate/
Dear Maren, hello from Germany too, thank you for sharing! May I ask what is IMG IM? And how to order Equilibrant from Germany? Thank you!
There are many of us that got initial symptoms but were able to continue rigorous activity and work. After I first got sick, thing would get better, then worse then better but I was able to maintain a high stress job running a brokerage firm for 4 years until I just could not do it anymore. I sold my practice thinking that would do the trick but I actually got so much worse. I descended into needing help with everything, literally. I went from doc to doc including the Mayo Clinic. Nothing but guesses until my rheumatologist suggested CFS and referred me to a specialist. I wish I could say that a CFS doc is the answer but he made things worse. A functional medicine doc finally found a treatment protocol that works for me, as long as I do not push too far. I learned that hard way too..
How nice it would be if there were a set protocol for ME/CFS that helped. Glad to hear you finally found something. If you feel like sharing….please do.
Hello Jessica,
You say Rifing helped. What frequencies do you take?
Thanks a lot. Frank
What an amazing story. Gallagher’s perspective will prove very valuable for those of us who have to deal with the maddeningly circuitous, but sometimes fantastic, world of doctors and ME/CFS and fibromyalgia. It can be so very daunting just to understand ourselves and not give up on ourselves when it seems like everybody else does or has already. Support from a spouse or parents can prove so vital, or so crushing when it is sadly lacking. That is why understanding this disease and speaking out means the world to our community in the broad perspective.
Just to add another story against the ‘sick because of deconditioning ‘ stigma because it’s the worst.
I love sports, I’m a big fan of volleyball. Since I was 10 it has been my favourite pastime of all. Indoor volleybal and later I added fitness to become stronger and better. But I really fell in love with beach volleyball, plowing, diving, running and jumping in the sand, deciding how to play for yourself with only your partner. The competition was a whole day every weekend with 4 or 5 complete matches on location somewhere in the country. I worked out 4 or 5 times a week. So I must have been in very good shape.
But in 2016 I couldn’t finish the tournament days. I was already sick for 4 years but I thought it was burnout or ’emotionally tired’ as one GP called it and working out was good for me.
In 2017 I only could go to beachvolleybal practice once a week and no more fitness. After a huge (I think) PEM episode I got home bound. Still believing in this super dumb deconditioning story I tried everything to stay in shape. Which obviously didn’t work.
And therefore I think that to become this ill you NEED willpower and drive and everything else this stigma says we don’t have. If I were lazy I would’ve never became bedbound. I think almost everyone of you has an iron will to make something of your life. Whether in your career, as a parent, an athlete or whatever. You don’t give up! And that is what makes this stigma so dangerous in my eyes.
I wish we could make a book (or ebook) with all of our stories where we could all fill one page with a picture and or text telling that story of what and how it happened.
Cort, et al. Thank you so much. I am extremely grateful that you took the time to read, review and recommend my book, Cort. I have been reading your content for years. And thanks to everyone else here for reading and responding to what Cort wrote.
To answer a few questions (I am happy to answer plenty more), let me say that while I had PEM, I only had it intermittently at first and did not have unrefreshing sleep. It was the lack of unrefreshing sleep and the fact that my fatigue was alleviated by rest that made me feel I did not meet the IOM criteria for ME/CFS. That went on for years before I met the criteria.
I was in the utter depths of hell. I wrote about that. What got me out of that? I don’t know. Extreme rest? Pacing? Cyclical nature of the disease? Medications? It is so hard for anyone to know. I take several medications and I have a hard time knowing if any of them is truly helping. They don’t help like an advil and take away my PEM 20 minutes later. The, PERHAPS, help by decreasing the frequency and severity of my crashes.
I am still sick. I still crash. But I am worlds better than where I was. I can work part time and still do some surgeries. But I can’t exercise. Going out to a concert or ball game can put me in bed for a day or two. I save most of my energy for work.
I don’t know where I am headed. I hope never, ever back to where I was in 2020. But I have zero idea what the future holds. That’s one of the things that is so devastating about ME/CFS. But, you all know that.
There is an audible version available for anyone that has trouble reading. If you are struggling financially you can reach out to me and I will try to find a way to send a free audible version (Audible limits my ability to do this).
Amazon reviews help a ton for a book like this. My goal is for people unfamiliar with ME/CFS to read the book and understand the hell we are all going through by telling my own story not just of ME/CFS but also of being a real person with what I think are some very interesting characters in my life.
I have had a few reviews written on Amazon seemingly by people with ME that were critical of the book for not being 100% about ME/CFS or not being prescriptive. I understand where those feelings come from. If you are considering reading it, know that it is a memoir. It is first and foremost about storytelling. It does not lay out a way for any one person to get better. It is about my experience on both sides of the healthcare system and about losing some of the things in life I held dearest while finding a few silver linings in the life I now have.
Thanks, again, to each and every one of you for reading or sharing my story. I hope it helps you or someone else out there.
So nice you’re here Dr Gallagher 🙂
Any tips on how to communicate to non-ME doctors about ME symptoms and diagnosis. (I just deleted a long list of approaches I’ve tried–any insight would be helpful!) Thanks
Hi Dr Gallagher, so glad you saw Cort’s blog. As I wrote above, I’ve read your book already and will read it again, as I don’t trust my memory 🙂 and I will write an Amazon review. I read one chapter a day before and will do so again.
I was so struck by your courage and tenacity – you just did stuff and got things done – whatever it took. But even you were brought down by this weird condition, that’s so difficult to grasp. It’s good to hear that you’re doing so much better now.
Thanks. Actually time was not an issue – the book just flew by – and I really did have trouble putting it down 🙂
I’ve always thought the fatigue being alleviated by rest thing was a little squirrely. Certainly, rest can alleviate some of the fatigue – after I’ve pushed too hard – and I can feel much better by resting (at times) – but get moving again – and boom! That’s the ticket in ME/CFS for me.
I hope some people will check out the Amazon reviews – they’re as good as I’ve ever seen for a book. A few people aren’t interested in the more “memorish” (memorish?) aspects of the book but I thought they were great. The issues with addiction that some in your circle faced was just eye-opening. I have so little experience with that. It’s amazing the things that happen to many of us – none of which could have been predicted – as we get on.
I think told “our stories” vividly and well; by “our” I mean all the exercise lovers out there who had this central, enjoyable and life-affirming part of our lives eliminated by this disease. You spoke for us very well – and that was one of the reasons I had trouble putting the book down.
Thanks to Patrick in BC for recommending it to me!
After Dr Gallagher mentioned the Amazon reviews, I went and read them all. The majority of them are very positive and what’s encouraging, is that many are from members of the medical profession, some who knew Dr Gallagher and they often stated they’d become more aware of ME/CFS, through reading the book and that’s really helpful.
Thank you so much for sharing this story. I’ve alternately cried and smiled all morning after reading the above article, and I’m ordering this book today. I swam competitively through college, and ran casually for fun, and, oh, how I miss those. Your story is so validating–we’re not making this up, we’re not lazy, we’re not just deconditioned-this disease is real. I wonder how many thousands of times I will need to repeat that to myself before I truly believe it all the way down into my soul. I, too, have found peace, beauty, and joy in this strange world we’re living in, alongside the grief and loss, and in reading just the little bit of this story shared I’ve felt grief, hope, and love. My heart goes out to the Gallagher family and please know that you have touched me powerfully.
I just came across this and will purchase the book. I’ve struggled with ME/CFS for many years, intermittently. When crashes occurred, it would last for months but I always bounced back. Now, I am 11 months into another relapse that just isn’t getting any better. I vowed to NOT let ME/CFS define me but I have to admit at this point that I’m finding it difficult to define my life otherwise since I cannot seem to find much of anything I have to offer. Can anyone give me some insight as to how they have managed to stay positive while being confined to the couch most of the time?
Hi MMF, as you have asked, I’ll try and share some things from own experience.
– Get creative with pacing and be proud of it (e.g. organise energy saving household appliances for yourself such as automated vaccuum cleaner, wheel saddle chair so you need not stand in the kitchen), plan for energy saving dishes such as buying a big deep freezer so you can cook a whole pot of rice and freeze many portions…). (I did not organise these things before my last crash and I wish I did :-)). It’s always a bit of a happy Heureka moment when I discover for myself a new pacing trick that works for me way for me, such as “hey, I could separate washing my hair from taking a shower!” 😀
– Mentally focus on the good news (such as in spite of the struggle for recognition still going on, the pandemic having resulted in a big shift of awareness for the disease, guidelines such as NICE having been updated, and more biomedical research than ever before).
– While you may not be able to express parts of your personality now, focus on the other parts of your personality you are applying right now and can be proud of, such as tenacity, taking care of yourself, inventiveness,… Allow for feeling grief but don’t focus only on what you can’t do, but (if you did not already do so) maybe consciously think about what new interests you could still explore in spite of limited energy, and what ways there might be for you to stay in touch with people).
– I can only speak for myself, but it helps me to NOT think about things I can’t do currently, because that would only put me under pressure.
-Focus on the small successes – was there still a little something in your day you can be content about?
– Avoid putting yourself under pressure by expectations. But try to view the future as something always open to development and change (such as you getting better).
– Try to stay in touch with people in ways that work for you
Flip around perspective and try to view resting as a sport, not as a time where you can’t do things. (I am really bad at resting. BTW :-))
– Make use of mental support freecall hotlines (also with ME/CFS, it is worth looking into the available landscape for free mental support services to help cope with the illness).
-While ME/CFS is not a psychogenic illness, there are techniques from the field of depression treatment such as reframing, and many other mental techniques and exercises to help explore and sort out one’s feelings.
– Be ware, that in human beings there is not just one drive, one “wanting” something. There can be various and sometimes conflicting needs, such as the psychological need for human contact, versus the body’s need to rest. There can be needs, impulses, and things you think you should do (but don’t actually want or need). I’ve found there are often ambivalent feelings or conflicting needs due to the special situation that comes with ME/CFS, and it can help to have an inner dialogue about them and make compromises within oneself :-), there’s even a method (inner team) that can help with it.
-What helps me too sometimes (though that’s a bit dark humour) is to think about how others have it worse than me, and what I am still able to do…
-If you are into technical gadgets, get yourself some shiny ME/CFS tech for pacing with a heart rate monitor, or a TENS machine for vagus training and experiment with it (I have cognitive difficulty selecting them but would like to try).
-There are things that we are not in control of as ME/CFS patients, but others where we can have influence (such as being inventive with Pacing).
– Getting away from “all or nothing at all” view towards “how can I adapt an activity so I can still do it?”, or “what is the need I want satisfied by this activity, is there another way to fulfil this need?” Example 1: If I can go for a run any more, can I still go for a walk? If I can’t go for a long walk, can I go for a short walk e.g. to the bench in the next street? If I can’t go for a walk, can I sit in front of my appartment to catch a bit of fresh air? If I can’t to this due to sensory hypersensitivity, can I do it with ear plugs? Example 2: I have a need to do something against stiffness in the body. Not being able to do sports, are little movements possible within my energy envelope to keep tissues fluid, such as stretches, rolling shoulders, etc…?
– Pick a task small enough for you to complete to give yourself an experience of success. If you can’t due to energy, praise yourself for pacing 😀
-Often the antidote to a depressed view is actually not an pink-glasses overly positive view, but getting to a realistic view of a situation.
– Does “I vowed to NOT let ME/CFS define me” create pressure for you? I would for me. I once read a sentence somewhere that “unrealistic expectations will only make you fail” in your own eyes. It’s important to allow room for feeling the feels such as grief, anger,…, but also I believe a certain acceptance that the chronic illness situation is what it currently is helps, as it sets the frame for what is realistic right now, and based on that allows to view every improvement or new illness management skill as a success.
– Finally, stay flexible. Be aware that one method may help on some days, and another may help better on others.
This of course does not mean I walk around with a big goofy grin every day. It’s just some tools in the anti-depression toolbox that can help me.
So these were some of the more healthy tipps 🙂 The not-so-healthy one (*distracting oneself by enjoying web content*) should of course be taken in limited dosage as it also consumes energy.
Kind regards 🙂
P.S. sorry for any suggestions beyond your energy. It was not quite clear to me what your current level is.
JR, thank you so much for your suggestions and all the time and energy it took you to write such a thoughtful response! I will re-read it again and seriously consider implementing each suggestion that works for me. This was VERY helpful and it even triggered a thought to start a gratitude journal! I have been journaling throughout each day to help with pacing and figuring out what works/doesn’t work for me. I think writing something in a gratitude journal will help as well.
You mentioned a ME/CFS hotline. Is there one in exisistence that you know of??
Thank you!
Dear Martha, thanks for your reply! I am glad you might find this helpful.
About your question: I wasn’t referring to a ME/CFS helpline, but to mental health helplines in general. In Germany there is a well-established system called “Telefonseelsorge” where trained volunteers are available for anonymous talking 24/7. Though it’s run by catholic and evangelical church, the content of talking is not religious (unless you want it to be, I guess). Also in the German psychosocial basic care system there is a (less well-known) possibility of free talking appointments once a month. I’ve even thought about contacting a volunteering organisation to arrange for someone to come visit (though for security aspects it would be important the organisation does good vetting). Online self-help groups with video meetings are also a possibility (though too exhausting for me). It might be worth researching what free support or counseling might be available where you live. When struggling with research, it can be helpful to start with locating local social centers who have an overview of services and can aid in identifying options. The options I used had no relation to the official doctors and health pension processes. Maybe ME/CFS patient organisations can tell you if there is an ME/CFS helpline, too.
Yes, I sometimes also seem to practice gratitude :-). When I lie there, I sometimes tell myself: I’m really grateful that I CAN actually lie here right now, that nobody wants something from me and that I don’t have duties that would pull me into a spiral of further crashes. (That somehow also relates to an anti-depression technique called upward-/downward comparisons: To compare oneself to an upward target causes a sad feeling ( like “I used to do everything, now I can only do 10%), comparing onself to a downward target causes a feeling of success (like: “I am better than last week!”).
As further below you’ve talked about travelling, a thought that’s helped me is that now is a time of life for “inner travelling”, i.e. new experiences not from new countries, but curiosity about self-experience, and maybe discovering and teaching oneself some new skills in the “inner domain”. For example, I find resting hard because of being wired-up (sometimes I wonder if I might have ADHD, too), and plan on finding other things I can do to keep myself busy in a low-energy way while lying on my back, such as mental muscle relaxation exercises, or breathing exercises or vagal stimulation or nervous system exercises like this one https://www.youtube.com/watch?v=UQN2a03bW_Y from the channel that Dr with ME Asad Khan recommends in his linktree page (worked also with fingernails instead of finger massage ring for me). Obviously, often the brain is just too tired for anything like that. But curiosity and looking at it from the point of view of being your own “observant scientist” is always something that can pull me a bit “out of the mud”, and if it’s only to ask: “Resting doing completely nothing is necessary but feels bad, because I am wired and the body feels toxic. But hm, if I stick with it, I am curious about how many minutes it’s going to take until I feel a slight relief?”).
Just saw there is a national US mental health crisis hotline with new number 988 (Solve ME/CFS retweeted this): https://twitter.com/988Lifeline/status/1549755643795542017?cxt=HHwWgsC40YGj64ErAAAA
There also seems to be a chat.
To MMR: can you read? or if not (I wasn’t able to until recently, and very slowly), can you listen to books on tape? It has helped me stay positive, and helped me sleep better, especially if you can get into some novels that take you into a different world.
I have three different pairs of reading glasses at different magnification depending on how I’m doing, and have found some books have taken me into another world where all this misery retreats.
One approach is to read mystery novels set in foreign countries. E.g., Tana French’s Dublin Murder Squad Mystery Series. I read all of them — extremely slowly, over several weeks, at night between finishing dinner and going to bed.
Now into Trees. Again, super slowly, but speed isn’t the point. Just finished “the Overstory” and now have a couple of books about trees to follow the novel.
We are still the full people we ever were, even if we’re feeling feeble physically.
I used to travel around the world a lot; now I do “micro-travel”. I highly recommend it for managing to stay positive while being confined to the couch most of the time.
Courage, as the French would say.
Thank you Cameron! I did just finish a book. My arms and hands tend to be very weak so I found that when curl up into the back of the couch, it helps in holding the book up for me. (I guess I’m more creative than I give myself credit!). Focus and comprehension can be a struggle so I just re-read (I’m sure that’s the case for many). Although I’m more visual than auditory, I will definitely give audio books a try!!
I’ve traveled to many countries as well and what I do is screenshot beautiful pictures (from Instagram) of the countries I love and go back to scroll through them from time to time. It helps!
Thank you!!
Over-training syndrome and CFS are the same thing. Only difference is that people recover from (mild) ots in days or weeks. If you don’t for 6 mo or more, it becomes reclassified as CFS as mine has.
Any sustained intensity/speed will kill you. You either do high intensity in a very short spurt, or low intensity in duration. My guess is that Gallagher recovered and then relapsed if he was able to that much between the sickness. I used to get sick 6 weeks at a time and then recover, only to repeat again. So it’s not unimaginable for someone to repeat sickness/recovery for longer periods.
Oh so sad a story.
As the parent of a sufferer what made me the saddest was the reflection of “what if you got sick early in life before you had had any opportunity”.
my daughter became sick on her 13th birthday. On the cusp of becoming her ‘real’ self. Her entire further education through high school (13-17) and 6 years of ‘slow’ university was completed by ‘need to attend’ only. Some days i would drive her into school and pick her up for a rest between classes a few times a day. At Uni…. much on line.
She is such a gentle and beautiful soul, very intelligent and now at 26 it is devastating to watch her at home without prospects to live her life, or form friendship circles, have relationships. Anxiety has become a large part of the suffering. And depression.
I had to write up a bit of a health history recently for the new naturopath we are changing to and seriously i feel like i too have PTSD trying to metabolise everything that has/is happening for her …for over 13 years now.
The helplessness despite all i have tried to do for her, and continue to do, is mortifying. I am crying as i write this.
Hugs! It sounds like you’re being an awesome mum, and I hope you find time and things for yourself that do you good!
I think you are a mom who loves and supports her daughter. I am so sorry that you are both going through this. I can’t provide any answers. I can only say that I honor the love in your family.
Cort, in response to whether your experience would have been different if you’d fallen to ME at 40 instead of 20, I would say, don’t even ask. Everyone has different challenges and heartache from when ME strikes. This fellow is lucky is family stuck with him, and that, apparently, he continued to get income from somewhere.
Most of us don’t. Family and friends slink away, income stops. And lets not forget the huge burden the disability insurance industry puts on people. They followed me around with video cameras to try to prove I was fine; when I found out what they were doing, I was loathe to have my friends caught on film and subjected to questioning.
ME/CFS cost me not only my health, but most of my friends, and much of my family, and has been a financial disaster. I am lucky I have had two doctors who have stuck with me and I am lucky for that.
ALso, we are all lucky for your work.
Yes, indeed. We’re going to have something up soon that will help illuminate the financial and other costs having this illness brings.
Michael Gallagher, thank you for being so open with your story. I struggled for years to hide my condition, and became quite skilled at “faking it”. Taking a conference call while laying on the floor at home, curtains closed? No problem. Please tell your MD friends that ME/CFS patients are not faking being ill, they are faking being well. In fact, I still catch myself doing this but with my medical team, but I am trying to stop it.
Nicely said. There’s this German politician who came out with having ME/CFS and revealed she uses green bed sheets and a green screen behind her bed – that way she even received awards from her bed, online in full make-up and evening dress, with the green background digitally replaced 🙂
Thanks, everyone, for responding to me and for adding more to this conversation.
I say that people with ME/CFS are sick people trying to pretend they are healthy, not healthy people trying to pretend they are sick. We all try to hide this mysterious, much-maligned illness from others. It is just too complicated to explain most of the time.
I still have a hard time saying, “I have myalgic encephalomyelitis” instead of “I have chronic fatigue syndrome” because the words ring hollow in the ears of nearly all people. A lot of further explanation is required. BUT, I am on a mission to educate as many as possible about the illness, and so I try my best to take the time to explain.
The most common refrain I hear is “But you look so healthy!” It is a compliment and yet an ignorant statement at the same time. I think people mean well, but they just don’t understand the reality of ME.
I may be doing fine one day and in bed the next. I know I am preaching to the choir here.
I am fortunate that I can work part-time and had the energy to write a book. The short period of time during which I had brain fog was awful. My heart goes out to each and every one of you still struggling on any level with ME.
Again, Cort, thanks for all that you do.