Any cyclists with ME (Chronic Fatigue Syndrome) out there?
- Thread starter bobg
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albion
Guru
- Location
- South Tyneside
I really thought there was no test, it just being yet another label for a set of symptoms.
Until 3 years ago, it was close to 100% of what I had. What I found was that I needed more and more prolonged exerecise to get any relief. Whilst the relief lasting less and less I do feel it is the exercise that kept me alive, the central base of all the problems being sleep apnea.
I sorted my inflammatory response and gradually the symptoms subsided.
albion
Guru
- Location
- South Tyneside
https://en.wikipedia.org/wiki/Chronic_fatigue_syndrome
'Biological, genetic, infectious, and psychological mechanisms have been proposed, but the cause is not understood.[5][6] The fatigue of CFS is not due to ongoing exertion, is not much relieved by rest, and is not due to any other medical condition.[7] Diagnosis is based on a patient's signs and symptoms.[8]'
Are you 100% sure your doctor knows what he is talking about? My symptoms fit/fitted that wiki close to 100%.
Interestingly, I can still get some malaise after a short tour, but it is near getting quantifiable enough that I hope to circumvent it in future.
Please do not think this applies to everyone, but not exercising, for me, made things worse, it being entirely possible CFS covers dozens of different infections/allergies/immune responses.
'Biological, genetic, infectious, and psychological mechanisms have been proposed, but the cause is not understood.[5][6] The fatigue of CFS is not due to ongoing exertion, is not much relieved by rest, and is not due to any other medical condition.[7] Diagnosis is based on a patient's signs and symptoms.[8]'
Are you 100% sure your doctor knows what he is talking about? My symptoms fit/fitted that wiki close to 100%.
Interestingly, I can still get some malaise after a short tour, but it is near getting quantifiable enough that I hope to circumvent it in future.
Please do not think this applies to everyone, but not exercising, for me, made things worse, it being entirely possible CFS covers dozens of different infections/allergies/immune responses.
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albion
Guru
- Location
- South Tyneside
https://www.sciencedaily.com/releases/2016/06/160627160939.htm
The research science headline is 'Chronic fatigue syndrome is in your gut, not your head'.
It seems they can now diagnose CFS scientifically.
"Furthermore, our detection of a biological abnormality provides further evidence against the ridiculous concept that the disease is psychological in origin."
"The researchers have no evidence to distinguish whether the altered gut microbiome is a cause or a whether it is a consequence of disease, Giloteaux added."
The research science headline is 'Chronic fatigue syndrome is in your gut, not your head'.
It seems they can now diagnose CFS scientifically.
"Furthermore, our detection of a biological abnormality provides further evidence against the ridiculous concept that the disease is psychological in origin."
"The researchers have no evidence to distinguish whether the altered gut microbiome is a cause or a whether it is a consequence of disease, Giloteaux added."
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Dave Davenport
Guru
- Location
- Hampshire
I'm riding a 10 mile TT on a tandem tomorrow with a friend who has ME, she's doing a sponsored 'tandem tart challenge' with a different partner each week.
She really struggled for a couple of years after being a very strong time trialist but has been riding again for about 18 months and although she still has the odd blip is gradually recovering her fitness, she managed an excellent 1.04 on last week's '25'.
She really struggled for a couple of years after being a very strong time trialist but has been riding again for about 18 months and although she still has the odd blip is gradually recovering her fitness, she managed an excellent 1.04 on last week's '25'.
MarquisMatsugae
Guest
Can this not be regarded as psychosomatic ?
Where people start thinking the very worst,such as MS etc.
Where people start thinking the very worst,such as MS etc.
I ask because after 2 1/2 years of tests that seems to be whats wrong with me. The doc said no more riding , or any kind of exercise, ever. I'm very sad. I may ignore him and if I'm knackered for 2 days after a gentle hours ride then I think it might be worth it.....
BTW dont feel sorry for me cos you have no idea what horrible illnesses I thought I had, and if the worse comes to the worse and I really cant ride then I've had 45 years of it and I'll just buy an electric bike
albion
Guru
- Location
- South Tyneside
Yes, and that is often used as a reason to do nothing.
Fibromyalgia is interesting, here the NHS only acknowledge a trigger event with not even a half cure.
But if you read science journals there is a cure for many a thing, it is just not out there and thus not part of the NHS.
http://www.dailymail.co.uk/health/article-2174474/The-GP-gave-fruit-veg-cure-aches-pains.html
The way that is written, and by a standard UK GP with no financial gain in mind shows there is often a physical cause.
For some people there, fibromyalgia is an allergy.
Fibromyalgia is interesting, here the NHS only acknowledge a trigger event with not even a half cure.
But if you read science journals there is a cure for many a thing, it is just not out there and thus not part of the NHS.
http://www.dailymail.co.uk/health/article-2174474/The-GP-gave-fruit-veg-cure-aches-pains.html
The way that is written, and by a standard UK GP with no financial gain in mind shows there is often a physical cause.
For some people there, fibromyalgia is an allergy.
MarquisMatsugae
Guest
Yes,it's said that they can't cure it medically as there are no physical symptoms to cure.
But for the sufferer,it's very real.
Whether it's physical or mental,it's still an illness regardless.
And still a puzzle to some practitioners(to my knowledge)
People get prickly when you mention anything to do with mental issues concerning their condition,but it's not meant to be derogatory.
There is nothing wrong with them in that respect.
And physical pain is real,but they can't find the symptoms.
Dunno,it's a complex illness
But for the sufferer,it's very real.
Whether it's physical or mental,it's still an illness regardless.
And still a puzzle to some practitioners(to my knowledge)
People get prickly when you mention anything to do with mental issues concerning their condition,but it's not meant to be derogatory.
There is nothing wrong with them in that respect.
And physical pain is real,but they can't find the symptoms.
Dunno,it's a complex illness
albion
Guru
- Location
- South Tyneside
Even depression has similar physical symptoms, that being inflammation.
The IBS, headaches and pains infer inflammation, plus tests show a fair set of inflammatory markers for patients.
Those are science tests, the NHS only having use for tests that lead to prescription treatment.
And no one is much looking for virus or any other cause, they are spending their millions looking for treatments.
The IBS, headaches and pains infer inflammation, plus tests show a fair set of inflammatory markers for patients.
Those are science tests, the NHS only having use for tests that lead to prescription treatment.
And no one is much looking for virus or any other cause, they are spending their millions looking for treatments.
MarquisMatsugae
Guest
SuziRider
Regular
- Location
- San Jose, Ca
Cause of the cellular dysfunction is a low-grade viral infection, caused by multiple viruses (i.e. whatever was dormant in your system since you were a kid). Cause of the viruses acting up is a lowered immune system caused by a physical, chemical, or emotional stress; i.e. It can be triggered by such things as an accident or surgery, chemo, Rx, antibiotics, job loss, or a divorce.
Cause of the fatigue is the inflammation and low ATP energy in the cells from the above.
It all snowballs, and is hard to get rid of except by eliminating ALL stressors (including any patented chemicals =Rx drugs, pesticide residues), taking anti-virals, supplementing the Kreb's cycle with magnesium, d-ribose, CoQ10, Omega3s, L-carnitine, and vitamins; and (most importantly) rebuilding the immune system through healthy 'clean' eating and living. It does not happen overnight!
Endurance can be rebuilt by ALWAYS keeping your heart rate under the Aerobic Threshold (AT), which is usually right around 60-65% of your Maximum Heart Rate, which is around <120 for the average 40+ person. This keeps you in aerobic 'fat-burning' mode, which is important. Going anaerobic (burning sugars) really screws up the energy pathway in CFS people and causes flu-like aches or a burning lactate build up.
Wear your HR monitor (with an alarm if it goes above your AT) while walking, doing yardwork, playing with the kids, etc.
Dont eat sugars and simple carbs.
Do eat more 'good' fats, including MCT oil, Extra Virgin Olive Oil, grass-fed butter, organic coconut Oil, and cold-water fish (Omega3 oil).
If there are hills on your route, get an electric bike or go *really* slow & keep the HR down, or find a new flatter and shorter route. If you can do the same pace and distance the next day, you are doing well, otherwise you are overdoing it. A study showed that CFS people can only do 60% as much of a maximum effort the next day, while Normal people (incl. couch potatoes) can do the same amount or more.
Most CFS people take an average of 49 hours to recover from an hour of exercise (normal people take 4.5 hrs) per one study, so you may only be able to ride every other or 3rd day at first.
It took me a year to ride 25-30 flat 12 mph miles (my normal retiree group ride) 2 days in a row. That is a good sign of progress! I progressed quickly after that.
Read 'Endurance Training and Racing' by Dr. Philip Maffetone to learn the benefits and why riding slow works. He mostly talks about training high-caliber athletes, but it holds true for CFS people also.
SuziRider
Regular
- Location
- San Jose, Ca
Interesting study showed that Depressed people dream 3x as much as normal people. They also had no goals if you asked them "What would you do if your depression was suddenly gone tomorrow?"
CFS people were the opposite.
Rarely dream and a dozen goals.
It makes it easier to tell the two apart.
MarquisMatsugae
Guest
I have a sister called Suzi who lives in San Jose 
Is that you Suzi ? !!!!!
Is that you Suzi ? !!!!!
albion
Guru
- Location
- South Tyneside
Interesting stuff. I read it chemo added 2.1% benefit to survival, still a low benefit, but there none the less. Data is very complex so its hard to draw something conclusive. And that 2.1% could skew anywhere if it was a true like for like comparison.
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Yes I suffer from ME (am in contact with Dr Myhill, SuziRider) and have also got an electric bike. Its far better than not going out at all and all the televised cycling helps when you can't get out (TdF and La Vuelta ect on itv4) What model electric has your friend got gavgav just out of interest?
