Earlier this year I was diagnosed with Epstein Barr Virus which then became Post Viral Fatigue (PVT). PVT is basically Chronic Fatigue Syndrome except the symptoms are new and as a result of a viral infection. If you're still suffering 6+ months later the diagnosis becomes Chronic Fatigue.
It was a nightmare. I went from an athlete training 14+ hours per week to a bed bound individual. There was a period of 3 months where all I did was work and sleep. My children, who normally eat healthy, were getting nuggets and chips for dinner nightly as I was too exhausted to cook and would just buy them take away. I would buy them dinner, out on a movie and tell them to wake daddy when it finishes. I personally gained around 9-10kg over 5 months due to not cooking and not moving.
I'm at the 8 month mark now and I'm very close to being 100% better. I'll be back training 7 hours per week this week, I've started losing the weight I gained, and I'm not spending all my free time sleeping.
The worst part of the experience is the doctors not having much of an understanding of the disease. Being told "you should be better in 12 months but it might last year's" is a horrible thing to hear when the disease is making your life fall apart. The only positive is that I've had every blood test you can think of, most tests twice, and I'm a bill of health.
I'm sorry to hear what happened to you and happy to know you're better.
May I ask how do you manage to train 14+ hours per day with a job and kids?
I'm an engineer and would love to train more to recover form the sedentary lifestyle that's taking a toll on my health but can barely manage 8 hours of training per week alongside the job, cooking, chores and meeting friends.
Sure. I'm in the military and get 5 hours of unit PT per week. I work out for an hour each lunch for 5 more hours. I'm lucky in that we have gyms at work. For the last 4-7 hours I train an hour a day, when possible, in Brazillian Ju Jitsu and Muay Thai. Unless you're quite fit I wouldn't recommend 14+ hours per week. I've been in the Army for a decade and my resting heart rate sits at about 40 BPM. Athlete levels of training takes years of buildup and is likely to be harmful to someone coming from a sedentary lifestyle.
I'm a very active person in all aspects of my life. I don't sit still, I can't even sit still long enough to watch a tv show. Even my workaholic Commanding Officer tells me I need to slow down. The biggest challenge is sleep. For 3 hours of training you really need to make sure you get 8 hours.
How old are your children? Once they reach a certain age you can incorporate them into an active lifestyle. For example, once they're 3-4+ you can take them out for a scooter while you walk. If they're younger you can put them in a pram and walk. Regular walking is a really underrated exercise for people battling a sedentary lifestyle. When I'm injured I increase my walking to offset lack of exercise. I'm a single father and the way I incorporate my children into a busy life is to make it part of their life. Cooking healthy dinners take a lot of time, so I have my kids in my kitchen learning about cooking so I multitask cooking and quality time.
Finally I should mention I'm quite introverted. I have plenty of friends but I don't choose to socialise often. I also don't have a commute worth mentioning due to living next to base. I know a lot of others have 2 hours per day of commuting and this could be the difference between how I find time to train.
Count your lucky stars, since, even though your tale is harrowing, I've seen worse things happen to people on account of EBV.
To wit, growing up in middle school, I had a classmate who was really popular. By some twist of fate, he disappeared without much explanation, and most people had presumed that he changed school districts or moved away, but this was not the case. He still lived in the same house but stopped attending school. He acquired EBV (allegedly from kissing one or more girls, owing to his reputation for being as popular as he was), and suffered long term symptoms, which then precipitated into debilitating dementia, from which he has never recovered.
So, from middle school on, his life was permanently altered, and he lives in an adult home now, unable to care for himself.
What's the trick to getting better? I have a milder version. I am considering a clinic that uses a graded exercise programme, because at the moment I am too scared to exercise but I know I need to.
I had Epstein Barr in a blood test a while back but so does 90% of the population IIRC. Do you need a specific mono test?
I've gotten better, but I don't know how or why. In case it offers anything useful, I'll just say what I did:
After I was initially diagnosed, I used modafinil for several years to give me a predictable portion of each day in which I was awake and alert. After a couple of years of that, my symptoms gradually abated, and I began, very slowly and carefully, to add some gentle exercise back into my routine. (Before the illness, I had been sort of an exercise fanatic, and I really missed it.)
The boundary on exercise was that I had to strictly avoid getting winded or fatigued, so my exercise regimen was extremely mild at first.
Very slowly and gradually I built up stamina, until, after a year or two, I was up to a couple miles of walking each day. I tried various other kinds of exercise, but most of them tempted me to overexert, and when I overexerted, I went backward.
It's now fourteen years after my initial diagnosis. I still have the syndrome--I can push myself into being symptomatic if I'm not careful--but I've learned some boundaries, and if I stay within them, I have a pretty normal, comfortable life. Nowadays I walk three to five miles a day, mostly around a nearby lake with my dog. Pretty good outcome!
Try adaptive pacing instead of GET, you’ll get much better results. Read Tom Kindlon, et al’s work on debunking GET. I can provide links, to papers etc if anyone wants them.
Side note: I have had ME/CFS since 2003, (partially bed bound and mostly housebound, raising 3 kids with my wife who now is also diagnosed) when it knocked me out of my USAF Reservist and my systems engineering careers. I helped admin PhoenixRising.me (a charity & forums for ME/CFS patients and allies) for many years.
If anyone has any questions about ME/CFS (aka SEIDs) or coping with it, feel free to ask.
Edit: Please follow and read some Jen Brea’s work on twitter: https://twitter.com/jenbrea/ and please try to watch (Sundance award winning!) “unrest” by @jenbrea .
What about for 'mild' CFS though. Not bed bound by a long shot, but strong enough to dampen life - for me going to work is the main thing and I try to do little else. But I can do 40 hours a week plus help out a bit a home and that is quite maintainable IMO, but if I did 40 hours a week plus look after kids plus some exercise I think I would be fucked. Last time I started going to the gym again - boom - the flu symptoms come back after 3 sessions. Not really going hard.
Fred Friedberg's protocol pushed a friend of mine into Severe ME and that person spent years in a nursing home as a result. At this point we know enough about Ramsay's observations on muscle fatiguability to know that anything involving exercise is absolutely contraindicated in this illness. What you are doing is irresponsible and dangerous. ME patients cannot tolerate exercise. Period, end of story.
What this person did, specifically, was listen to someone like you, and went out to Stony Brook, & FF and his protocol ruined what was left of this person's life. Instead of going to see an ME-knowledgeable doctor who possessed an understanding of what Melvin Ramsay had discovered decades earlier. You and your misinformation are dangerous, and it's not like you haven't been told, but you don't care. It's really too bad you can't held accountable for the damage you do.
I'm not sure exactly which point you're shooting for, my point is more about the provable altered metabolomics discovered over the past year and a half by Dr. Ian Lipkin, et al. Example paper from this summer:: https://www.nature.com/articles/s41598-018-28477-9
It looks like that article you quote is referencing "Metabolic profiling reveals anomalous energy metabolism and oxidative stress pathways in chronic fatigue syndrome patients". However if you look at Tomas' study, they were not able to replicate that study:
"Contrary to previous literature [15, 28] which suggested that abnormalities in PBMC ATP levels may be caused by glycolysis, results from the glycolysis stress test showed that glycolysis in CFS patients does not differ significantly from that of the non-disease cohort. "
So you need to be careful that the studies you're looking at have actually been replicated. In this case it wasn't replicated.
I don't know if there is a known trick. I simply waited it out and I slowly got better. There is a specific EBV test that tests for recent infection, as opposed to the other test that tests for any infection ever.
It was a nightmare. I went from an athlete training 14+ hours per week to a bed bound individual. There was a period of 3 months where all I did was work and sleep. My children, who normally eat healthy, were getting nuggets and chips for dinner nightly as I was too exhausted to cook and would just buy them take away. I would buy them dinner, out on a movie and tell them to wake daddy when it finishes. I personally gained around 9-10kg over 5 months due to not cooking and not moving.
I'm at the 8 month mark now and I'm very close to being 100% better. I'll be back training 7 hours per week this week, I've started losing the weight I gained, and I'm not spending all my free time sleeping.
The worst part of the experience is the doctors not having much of an understanding of the disease. Being told "you should be better in 12 months but it might last year's" is a horrible thing to hear when the disease is making your life fall apart. The only positive is that I've had every blood test you can think of, most tests twice, and I'm a bill of health.