# Any cyclists with ME (Chronic Fatigue Syndrome) out there?



## bobg (30 Jul 2010)

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


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## BobWales (2 Aug 2010)

Man that's rough Bob. If it helps, whilst I don't have ME I have witnessed a number of sufferers benefit from going electric. I have meniers, a balance thing, and my bike's throttle helps when I'm very "wobbly". It is possible to continue cycling mate!


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## bobg (2 Aug 2010)

BobWales said:


> Man that's rough Bob. If it helps, whilst I don't have ME I have witnessed a number of sufferers benefit from going electric. I have meniers, a balance thing, and my bike's throttle helps when I'm very "wobbly". It is possible to continue cycling mate!



Hi Bob, Thanks for the reply. It seems that one in 250 people have it in a very mild form. Nobody on cyclechat though...

Yeah, bit of a bummer especially as riding is at the centre of all I do. I've yet to get the therapy so there might be a chance that I can do some gentle stuff.
Funny you should mention Menierres cos that's on my CV too!! Its pretty much dormant and has been for a few years but its certainly no fun when it really gets a grip. Good luck with yours and I'm living proof that it goes away albeit slowly.


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## al78 (3 Aug 2010)

I can't help feeling some sympathy for you as I have problems with fatigue myself. I have had to give up on the faster club rides as I would get a major energy crash a couple of hours later and would spend Sunday afternoon and much of the evening in bed. I also have difficulty cycling to work daily as I just don't recover properly overnight, and always wake up feeling tired and groggy. Unfortunately my doctor is of the opinion that doing 19 miles a day is a hell of a lot of exercise, so she thinks it's normal for me to feel tired (not at the age of 32, surely).

Hopefully you will be able to manage some gentle riding.


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## Mad Doug Biker (3 Aug 2010)

bobg said:


> Hi Bob, Thanks for the reply. It seems that one in 250 people have it in a very mild form. Nobody on cyclechat though...



I might not have it, but having Chronic Lyeloid Leukaemia and still receiving heavy medication for it (it's slow moving and it's under control, but I have to take what is actually Chemotherapy, but only in pill form, and without most of the side effects like hair loss), I can totally understand the feelings of fatigue you have - I don't think I will EVER fall out of love with my bed! 

They thought I might have chronic fatigue syndrome at one point, but it appears it's just the treatment 

Anyway, good luck!


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## bobg (3 Aug 2010)

Thanks Al and MDB. I feel a bit of a drama queen after what you guys have said! The hospital painted a really gloomy picture that even mild exercise would make the symptoms more acute in the long term hence me being somewhat p$$d off. Too right about bed, I cant wait to get there plus the settee is compelling in mid afternoon.... From what they said, its just a bunch of symptoms, tiredness, weakness, aching muscles, confusion etc. and when they can't find another reason they call it ME. Mind you. like I said, the tests for MS and Motor Neorone put the shoots up me so to some degree this was almost a relief!!
There are 12 bikes hanging up in the garage and all I'm doing is pumping the tyres up ( slowly) ...


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## Spinney (3 Aug 2010)

al78 said:


> I can't help feeling some sympathy for you as I have problems with fatigue myself. I have had to give up on the faster club rides as I would get a major energy crash a couple of hours later and would spend Sunday afternoon and much of the evening in bed. I also have difficulty cycling to work daily as I just don't recover properly overnight, and always wake up feeling tired and groggy. Unfortunately my doctor is of the opinion that doing 19 miles a day is a hell of a lot of exercise, so she thinks it's normal for me to feel tired (not at the age of 32, surely).
> 
> Hopefully you will be able to manage some gentle riding.



al78 - You need to try to see a different doctor. If you used to be able to keep up with faster club runs without this fatigue, then obviously something has changed. It is not _normal for you_ to feel tired.


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## BenScoobert (3 Aug 2010)

bobg said:


> Hi Bob, Thanks for the reply. It seems that one in 250 people have it in a very mild form. Nobody on cyclechat though...



They couldn't be bothered to reply, get it? couldn't be bothered, oh never mind

Seriously though, a guy I work with got an electric for this reason as he couldn't cycle commute any more, he loves it and can peddle as hard or as light as he feels the urge.

Good luck with finding ways round


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## bobg (3 Aug 2010)

Spinney said:


> al78 - You need to try to see a different doctor. If you used to be able to keep up with faster club runs without this fatigue, then obviously something has changed. It is not _normal for you_ to feel tired.



Not sure about this Spinney. It may well be quite normal? Until 2 1/2 years ago when this kicked off I was doing 30 every morning, popping into the gym for an hour, quick swim and ride home. I was 60. This steadily and very slowly became more difficult over that period till I could barely climb the stairs. It's progressive and made worse by exercise (I'm told) I must have seen a dozen doctors during that period and only a month ago did one of them suggest ME and refer me to a specialist.


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## bobg (3 Aug 2010)

BenScoobert said:


> They couldn't be bothered to reply, get it? couldn't be bothered, oh never mind
> 
> Seriously though, a guy I work with got an electric for this reason as he couldn't cycle commute any more, he loves it and can peddle as hard or as light as he feels the urge.
> 
> Good luck with finding ways round



Thanks for the good wishes Ben. My only obstacle with buying an electric is in my head. I need to get over the fact that its cheating


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## Ravenbait (3 Aug 2010)

I was diagnosed with ME and FMS about 10 years ago. I received absolutely the opposite advice. Well. I received a bunch of absolutely worthless advice, amongst which was that I should have kids to keep me company when I'm old. I wish I were joking.

I woke up one morning and realised that there was no effing way I was going to let myself end up in a wheelchair, which was where I was headed. I joined a gym and started very slowly with weights once a week. Then twice a week a few months later Then three times a week. Then I added a small amount of cardio and progressed from there.

Having gone from being bedridden to cycling 20 miles each way on a commute I was told I no longer had ME, may never have had ME, but I might have lupus, only the blood tests were incorrect and yadda yadda yadda.

Whatever. I stopped paying attention. I still get tired -- I don't ever wake up bright-eyed and busy tailed, rather more feeling like I've been run over by a truck, repeatedly -- I have issues with trigger points and arthritis and sun-sensitivity and fatigue. But I've learned to listen to what my body wants and needs and pay attention to it. I balance the need for a minimal amount of exercise to stop me slipping down into that cycle with trying not to do too much because when I over-train it can make me crash for weeks.

The specialists will give you the best advice they can, but it's still your body and you're the one who has to live with it. They don't have a magical connection to see exactly how various activities make you feel. Only you know how you feel. They may offer drugs or cognitive behavioural therapy. They may tell you that some things are advisable and some things aren't. They may tell you some things will help and some things will make it worse. But only you can find out for sure if they're right or not.

I can't advise you on what is best for you. All I can say is that if I'd listened to what my specialist said I'd be on my arse with children crawling around my feet. As it is I'm still cycling and have since started competing in triathlons. I'm not far off 40, so the age difference may be a factor, but you asked if there were any cyclists out there with ME. I know of at least one paralympic athlete who has ME. It isn't necessarily the end of the world. I'd be tempted to ask how much of their advice is coloured by your age.

Do what's right for you.

Sam


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## BrumJim (3 Aug 2010)

Have you read about pacing? Sounds like that could be a good way to keep cycling with ME. Fits in with the advice you have already in that if cycling is making you tired, it is making the condition worse.

My wife had ME for 7 years. She is better now - can discuss this further if you want, as there is no magic pill or special therapy that will help everyone get better, but there was something that she tried that sorted it.

If they tell you to try Graded Exercise Therapy (GET), tell them to take a long walk along a short pier. Seriously. Does more harm than good. If they prescribe CBT instead, then ask the therapist what he knows about ME. Unless it is enough, then it'll do no harm, but not much good either.

Join the ME Association - you will find out a lot more that your doctor won't or can't tell you.


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## bobg (3 Aug 2010)

Thanks guys, thats soo helpful and has given me cause for optimism. I've only had the initial diagnosis, all the therapy and paced exercise comes later I guess. Before I knew what it was I was exercising within my limits cos thats what the neurologist said and although i felt pretty knackered the following day/s it was made up for by the satisfaction. As for aches etc, I've always had them cos I've always exercised.
I'll take what they tell me with a degree of scepticism then. My body wants to jump on my bike tomorrow whatever the consequences 
Know just what you mean about that run over by a truck feeling in the morning..........Thanks for the pm offer, I'd like to take you up on it please. Don't want to bore all these CCers with this thread bumping to the top


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## Mad Doug Biker (3 Aug 2010)

bobg said:


> Thanks Al and MDB. I feel a bit of a drama queen after what you guys have said! The hospital painted a really gloomy picture that even mild exercise would make the symptoms more acute in the long term hence me being somewhat p$d off. Too right about bed, I cant wait to get there plus the settee is compelling in mid afternoon.... From what they said, its just a bunch of symptoms, tiredness, weakness, aching muscles, confusion etc. and when they can't find another reason they call it ME. Mind you. like I said, the tests for MS and Motor Neorone put the shoots up me so to some degree this was almost a relief!!
> There are 12 bikes hanging up in the garage and all I'm doing is pumping the tyres up ( slowly) ...




Ah yes but CML and ME are two totally different things, so no, if you have ME, don't feel like such a drama Queen - that's up to the hypochondriacs of this world to do.
As for the likes of Motor Neurone Disease and others that are similar - it must be trully awful to end up with that sort of thing and I can understand why some want to go to Switzerland to ....well, to be bumped off.

Oh and the bikes will appreciate what you are doing, even if it is slowly (I have a puncture to sort out and quite frankly I can't be bothered right now, so good on you for pumping the tires up!).



bobg said:


> Thanks for the good wishes Ben. My only obstacle with buying an electric is in my head. I need to get over the fact that its cheating



Oh but if it's a motor in your bike, then nobody else need ever know you are cheating, I mean, if you were to beleive everything you read, then that's what they did in the Tour De France, and if they can get away with it, I'm sure you can too!


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## Spinney (3 Aug 2010)

bobg said:


> Not sure about this Spinney.  It may well be quite normal?  Until 2 1/2 years ago when this kicked off I was doing 30 every morning, popping into the gym for an hour, quick swim and ride home.  I was 60.  This steadily and very slowly  became more difficult over that period till I could barely climb the stairs. It's progressive and made worse by exercise (I'm told) I must have seen a dozen doctors during that period and only a month ago did one of them suggest ME and refer me to a specialist.


Yes, but al78 says he is only 32, and his doctor hasn't tested him for anything, just saying it is normal. I don't think it is normal at 32...


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## hambones (3 Aug 2010)

This thread is of interest to me as my best friend has ME. He has been advised to have up to 30 minutes light exercise a day, and to definitely have some. He's not worked now for 8 years and I can see the life draining out of him as he gets more and more depressed with his condition. At 43 he's seriously wondering what the future holds and that it has to be more than where he's at right now.


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## bobg (3 Aug 2010)

hambones said:


> This thread is of interest to me as my best friend has ME. He has been advised to have up to 30 minutes light exercise a day, and to definitely have some. He's not worked now for 8 years and I can see the life draining out of him as he gets more and more depressed with his condition. At 43 he's seriously wondering what the future holds and that it has to be more than where he's at right now.



That's very sad, 
I cant speak with much authority ( or I wouldn't be posting for info here ) but during an hour with the ME consultant she confirmed that it can certainly go away on its own and I now know of 2 people who were lucky enough to be rid of it. I can't speak with any confidence yet cos it's the exercise bit that still puzzles me but I get the impression that the illness and its diagnosis and what's best for sufferers is still very little known and even less understood . 30 mins a day of even light exercise is totally the opposite of what I was told but what's on here contradicts that too?
The younger you are the better it seems. State of mind seems to be important too ie the more depressed about it that you get the more likely it is to get worse. However I can fully understand how he feels especially at 43.


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## bobg (3 Aug 2010)

Spinney said:


> Yes, but al78 says he is only 32, and his doctor hasn't tested him for anything, just saying it is normal. I don't think it is normal at 32...



Sorry Spinney, I misunderstood. Confusion if one of the symptoms  You're quite right, most GP's dont even consider it - 
However, FWIW there is nothing to test, if you have the symptoms and nothing else can be diagnosed then its ME ( it seems)


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## al78 (3 Aug 2010)

Spinney said:


> al78 - You need to try to see a different doctor. If you used to be able to keep up with faster club runs without this fatigue, then obviously something has changed. It is not _normal for you_ to feel tired.



Yes, what I need is a doctor who also has an active lifestyle 

I think the reason I can't keep up with the fast club riders now is because they have got stronger over the last year or so, and I have not. They used to average 16-18 mph but now they are pushing 19, almost touching 20 mph average on one ride. No way I can keep that up over 45-50 miles.


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## BobWales (24 Aug 2010)

bobg said:


> Thanks for the good wishes Ben. My only obstacle with buying an electric is in my head. I need to get over the fact that its cheating



It's not cheating to ride an electric bike. An electric bike simply prevents over-stressing the body. You get the exercise you want, not what the road dictates. You could say that putting air in the tyres is cheating!

These are getting good reviews: Juicy Bike and I can vouch for them helping me get cycling again.


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## bobg (24 Aug 2010)

BobWales said:


> It's not cheating to ride an electric bike. An electric bike simply prevents over-stressing the body. You get the exercise you want, not what the road dictates. You could say that putting air in the tyres is cheating!
> 
> These are getting good reviews: Juicy Bike and I can vouch for them helping me get cycling again.




Just got an e mail about your last post today Bob, hence the delay in responding. Co- incidentally, I've arranged a visit to Buxton for a test ride in a couple of weeks and I'm impressed with the reviews plus the chap I spoke to was very helpful. I tried one of my "proper" bikes last week but I wasa bit ambitious and spent the following 2 days on the settee.... how depressing but totally my own silly fault.


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## SuziRider (20 Mar 2016)

Google 'Dr. Sarah Myhill CFS' to learn more about the cures for CFS/ME/FM. She is in the UK.
Dr. Jacob Teitelbaum, MD also has a good book on the treatment.
Dr.Montoya's CFS Center at Stanford Hospital in Palo Alto, Calif. also follows the late virologist Dr. Martin Lerner's protocols, too.
Most Natureopathic or Holistic doctors are also familiar with treating it. Most MD's are not.

The cause of CFS is mitochondrial dysfunction, meaning the Kreb's cycle is not producing enough ATP quick enough to fully power your cells. It is caused by low-grade semi-dormant viral infections and stress. Mine was triggered by a surgery.
Low ATP in muscle cells causes FM aches, or worst case: rigor mortis. Low ATP in the heart muscle causes low 'ejection' output, which is not measured by an EKG. Dizziness when standing up is the main symptom. Low brain ATP affects the hypothalmus and thus sleep, making deep 'recovery' sleep impossible. 
Pushing oneself causes flu-like aches and fatigue for days afterwards. The body slows the thyroid to try to get you to take it easy. So a high RT3/Free T3 ratio (>5%) is a symptom of CFS, not a cause. Other thyroid tests come out normal.
Taking D-Ribose 3x/day (a pentose sugar), CoQ10 (Ubiquinol), Magnesium, Acetyl-L-Carnitine, Omega3's, and a good Vit/Min helps restore energy in 1-3 months.


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## SuziRider (20 Mar 2016)

I used to train at the gym 1.5 hrs 4-5x/week in my late 20's and was a nationally ranked lifter and bodybuilder. In 2001, I got hit by a car and after a bunch of surgeries, was tired, achy, & bedridden for a long time, but was back in the gym for rehab in 2007. 
I figured out I had CFS when working out at the gym for an hour a 2-3 times a week always made my fatigue worse instead of better. I quit right after getting a national Masters (50+) Bench Press record and elbow surgery in 2011, but then started back once a week a year later. I retired from my job in 2014 when my fatigue was so bad I had a hard time making it through an 8-hour day.
I then I took up bicycle riding last year (2015) 3 months after another surgery (& thus flare up of CFS, again). I somehow also gained 25 lbs in 6 months, while eating only 1600 cal/day, low-carb. My heart rate would jump to 165 after going over an overpass on my 3 mile route, and not come down for 30 minutes. EKG, T-wave, chest Xray, etc were all normal. I started to ride the Lifecycle at the gym, keeping my heart rate low (110-120), and building up the miles for a few months, then eventually built up the miles outside. Now I can do 25-32 flat miles at 12 mph average with my morning riding club (a bunch of retirees 55-87 years old) 2x/wk, but doing more lays me up for a week instead of 2-3 days. I am just totally fatigued head to toe, but the legs don't ache at all since the riding itself is so easy for me, strength-wise.
I can not seem to progress past that level after 9 months of trying; My heart just goes too fast (165-178 bpm) on even minor 2% grades, leaving nothing for the hills. 
My cardio training books say it is normal to progress about 10% a week when starting out, so if you can ride 20 miles, then you should be able to do 22 the next week, and so on, which sounds reasonable. It worked for one month, then stopped. My 290 lb non-CFS friend was able to lose 30 lbs and ride 100 miles in 3 or 4 months, at age 63.
Nothing in my cardio training or CFS books addresses mid- or advanced level cardio training with CFS/ME, once PAST the Don't-Want-to-Get-Out-of Bed phase. 

Good News is that in the month since I started on the D-Ribose in my coffee, etc., I am now sleeping 5.5 to 6 hrs a night instead of 3.5 to 5, and need only 2-3 days to recover between flat rides instead of 3-4. My cardio fitness goals are to do 1) hills with names, 2) a century and 3) multi-day ride someday. 
With CFS, I have no idea if it is possible for me.

An electric bike, or a motorcycle, is one solution, but plenty of low HR (60-70% VO2 max) training 'as tolerated' with 1-3 days in between and frequent breaks is the better solution, per my research so far.


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## albion (20 Mar 2016)

Ravenbait said:


> I was diagnosed with ME and FMS about 10 years ago. I received absolutely the opposite advice. Well. I received a bunch of absolutely worthless advice.......The specialists will give you the best advice they can, but it's still your body and you're the one who has to live with it. They don't have a magical connection to see exactly how various activities make you feel. Only you know how you feel. They may offer drugs or cognitive behavioural therapy. They may tell you that some things are advisable and some things aren't. They may tell you some things will help and some things will make it worse. But only you can find out for sure if they're right or not........
> Do what's right for you.
> 
> Sam


As said, do what is right for you. I am sad to say the specialist will often follow a very limited 'call centre' type script that simply does not cover your reality. More so now with ever more limited finances available.

They are happy to spend millions mis-diagnosing because they are safe and secure sticking to what their limited computer says. 
Theres 25% of the population out there with a gene type which means they react to household moulds in the air, dusts and pollens yet they have zero interest in if or what this causes.

Mould will certainly cause most of these fatigue symtoms for some. No doubt other stuff does too and it is a massive shame that only those suffering are really looking for answers.


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## albion (20 Mar 2016)

BTW I can confirm the comments about building up exercise tolerance. 3 miles cycling at the beginning was far far harder that 80 mile rides months and months later.


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## albion (20 Mar 2016)

SuziRider said:


> ..The cause of CFS is mitochondrial dysfunction, meaning the Kreb's cycle is not producing enough ATP quick enough to fully power your cells. It is caused by low-grade semi-dormant viral infections and stress...



There is likely many a cause, it also being quite hard to fully describe symptoms as a cause.


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## ray-s (26 Mar 2016)

Reading this with interest. Diagnosed with stomach cancer last June and since then had 6 chemo and 15 radiotherapy sessions. Last radio was 8 weeks ago and been very tired and lethargic since then. Forcing myself to get out for walks but 3 days of walks in a row and I am knackered for about 4 days. Also been doing 1/2 hour sessions on the turbo, nice and easy which are ok but tried a harder session last weekend and still feel the effect of that 7 days later. Also since doing that the skin on my thighs and lower back has been tender for some reason. Spoke to my radio consultant who basically said I was wasting my time trying to get fit as it will take 3 months to get the radio out of my system and until then I was doing more harm than good. Might phone my GP on Tuesday about the tender skin.
Driving me nuts sitting around not being able to do anything and I have already considered an electric bike if I can't get back to enjoying a 50 or 60 mile ride so you have my sympathy.


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## Prometheus (29 Mar 2016)

Suzirider thanks for the info

I was affected two years ago!
By chance I took Magnesium, liquid iron and Vit/B's supplement.
And a new diet rich in Omega3's (fish 4 times a week) and a much better Vit/Min,s diet.
My stamina levels are now back to high, but now I eat just for Vitamins Minerals balance.


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## SuziRider (24 Jun 2016)

ray-s said:


> Reading this with interest. Diagnosed with stomach cancer last June and since then had 6 chemo and 15 radiotherapy sessions. Last radio was 8 weeks ago and been very tired and lethargic since then. Forcing myself to get out for walks but 3 days of walks in a row and I am knackered for about 4 days. Also been doing 1/2 hour sessions on the turbo, nice and easy which are ok but tried a harder session last weekend and still feel the effect of that 7 days later. Also since doing that the skin on my thighs and lower back has been tender for some reason. Spoke to my radio consultant who basically said I was wasting my time trying to get fit as it will take 3 months to get the radio out of my system and until then I was doing more harm than good. Might phone my GP on Tuesday about the tender skin.
> Driving me nuts sitting around not being able to do anything and I have already considered an electric bike if I can't get back to enjoying a 50 or 60 mile ride so you have my sympathy.



Chemo has about a 2.1% 5 year success rate for stomach cancer, or a 98% failure rate. It destroys the immune system, which is the exact opposite of what the body needs. Radiation and Chemo do NOT destroy cancerous stem cells, which is why cancers travel elsewhere.
'Chemo Fog' is CFS. Chemo lowers the immune system, so all those dormant viruses from all those sore throats, vaccines, Mono as a teen, etc. start acting up and inflamming your whole system. They aren't bad enough to trigger the immune system or be contagious, but are no longer fully dormant. Viruses act on the cellular DNA and the mitochondria in the cells. This affects the Kreb cycle and ATP production systemwide. Everybody reacts to low ATP production differently, and so CFS is diagnosed differently by every doctor, depending on their specialty. Holistic doctors usually see the underlying cause of all these half-dozen weird symptoms. Since the hypothalmus uses the most ATP (energy), main symptoms are the inability to get a good nights sleep and wake refreshed, and fatigue that last for months. Muscle aches & knots (FM), chills and hot sweats (poor temperature regulation) and Brain Fog are other common symptoms. Advanced cases where it affects the heart result in dizziness when standing up.

Follow virologist Dr. Martin Lerner's protocol of supplements to boost ATP production and get some energy back!


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## SuziRider (24 Jun 2016)

Measuring Heart Rate Variation (HRV) is helpful for athletes with CFS. Triathletes often use it for training, since it is easy for them to overtrain. Cardiologists use HRV to monitor their patients.
The Apps (like EliteHRV) are free, and a compatible bluetooth 4.0 heart rate chest strap monitor is about $40-$50. The more responsive the Vagus nerve and the heart to the needs of the body, the better your heart health. A low average score usually means you have previously had a heart attack, or will have one within 3 years.
The App scores your heart's responsiveness over 2.5 minutes in the morning, on a scale of 0-100. It also gives you a 'Readiness' (to train) score of 1-10. Average HRV for a normal person is around 60, and 70 to 80 for a rested athlete.
HRV will dip to the 30's after a hard or long workout, but bounce up again to the 60-100 range when the body has recovered in a couple days.
If your daily average score over a month is in the 30s or 40s (or worse!) and not 60+, it means you should see a cardiologist. Tell him you suspect low cellular ATP causing cardiomyopathy, since an EKG (electrical activity) and blood flow tests will usually be normal in people with CFS (as with every other standard medical test!)

Studies show people with a low HRV live to an average of 58.7 years, while the controls lived to 85. I am 56 with CFS, a low-ish HRV, and a heart that tends to race easily when I bike up the slightest incline, so this worries me!

Google 'Ben Greenfield HRV' to find out more about using this as a training tool.


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## gavgav (25 Jun 2016)

I know of someone who suffers badly with ME and they use an electric bike, which does them a huge amount of good. An option maybe?


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## albion (25 Jun 2016)

bobg said:


> 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 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.


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## albion (25 Jun 2016)

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.


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## albion (29 Jun 2016)

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."


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## Dave Davenport (29 Jun 2016)

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'.


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## MarquisMatsugae (15 Jul 2016)

Can this not be regarded as psychosomatic ?
Where people start thinking the very worst,such as MS etc.


bobg said:


> 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


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## albion (15 Jul 2016)

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.


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## MarquisMatsugae (15 Jul 2016)

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


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## albion (15 Jul 2016)

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.


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## MarquisMatsugae (15 Jul 2016)

I hope they do @albion ,very soon.
I don't have experience of it,but it must be terrible feeling so low,a sense of hopelessness I suppose.


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## SuziRider (18 Dec 2016)

albion said:


> There is likely many a cause, it also being quite hard to fully describe symptoms as a cause.



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.


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## SuziRider (18 Dec 2016)

albion said:


> Even depression has similar physical symptoms.....



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.


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## MarquisMatsugae (18 Dec 2016)

I have a sister called Suzi who lives in San Jose 
Is that you Suzi ? !!!!!


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## albion (18 Dec 2016)

SuziRider said:


> Chemo has about a 2.1% 5 year success rate for stomach cancer, or a 98% failure rate. It destroys the immune system, which is the exact opposite of what the body needs. Radiation and Chemo do NOT destroy cancerous stem cells, which is why cancers travel elsewhere.
> 'Chemo Fog' is CFS. Chemo lowers the immune system, so all those dormant viruses from all those sore throats, vaccines, Mono as a teen, etc. start acting up and inflamming your whole system. They aren't bad enough to trigger the immune system or be contagious, but are no longer fully dormant. Viruses act on the cellular DNA and the mitochondria in the cells. This affects the Kreb cycle and ATP production systemwide. Everybody reacts to low ATP production differently, and so CFS is diagnosed differently by every doctor, depending on their specialty. Holistic doctors usually see the underlying cause of all these half-dozen weird symptoms. Since the hypothalmus uses the most ATP (energy), main symptoms are the inability to get a good nights sleep and wake refreshed, and fatigue that last for months. Muscle aches & knots (FM), chills and hot sweats (poor temperature regulation) and Brain Fog are other common symptoms. Advanced cases where it affects the heart result in dizziness when standing up.
> 
> Follow virologist Dr. Martin Lerner's protocol of supplements to boost ATP production and get some energy back!



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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## Hulot (6 Jul 2017)

gavgav said:


> I know of someone who suffers badly with ME and they use an electric bike, which does them a huge amount of good. An option maybe?


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?


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## byegad (6 Jul 2017)

I was diagnosed with ME some 30 years ago. I had 8 months off work and returned only to be feeling very tired every day! Symptoms faded after another 18 months and I thought no more about it until ten years later when I had a comprehensive blood test for another suspected condition.

It turned out that I had antibodies for the Epstein~Barr virus and that's what caused my fatigue of ten years before!


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## gavgav (7 Jul 2017)

Hulot said:


> 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?


Calling @Rickshaw Phil Do you know which electric bike Nicky has got?


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## Rickshaw Phil (7 Jul 2017)

gavgav said:


> Calling @Rickshaw Phil Do you know which electric bike Nicky has got?


Can't remember, which is a bit remiss of me really since I've had it apart for repair. I know it was a make I wasn't familiar with. I'll have to ask her.


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## Hulot (11 Jul 2017)

byegad said:


> I was diagnosed with ME some 30 years ago. I had 8 months off work and returned only to be feeling very tired every day! Symptoms faded after another 18 months and I thought no more about it until ten years later when I had a comprehensive blood test for another suspected condition.
> 
> It turned out that I had antibodies for the Epstein~Barr virus and that's what caused my fatigue of ten years before!


 
Yes apparently the Epstein Barr virus/glandular fever can kick off the ME/CFS. Glad to hear you've improved byegad Thanks for making enquiries gavgav and Rickshaw Phil. Mine is a Cyclotricity Revolver (managed to fit a throttle on it to help with the hills ) Its also helped my old man (who's now 82) to carry on cycling!


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## Rickshaw Phil (11 Jul 2017)

I forgot to come back to the thread with the answer. Nicky has a Pro Rider E-Wayfarer. She picked it up fairly cheaply I believe and it's been doing a very good job for her so far.

It folds which is a bonus as it's then fairly easy for transport if needed.


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## Helenbells (11 Jul 2017)

I am "fat lady on an electric bike".
M.E. clobbered me in a big way, now 30 years ago. Five years bedbound and then walking sticks and still difficulty with walking. 
Got an electric bike. Bliss when I am well enough to use it.
Even got a car that now fits the two electric bikes upright, so we can travel to places, have a pootle around on cycles paths or whatever and load up easily without exhausting me. I am the cyclist and appreciate the freedom and mobility. Having the electric bike means I can stop and return back to the starting place without collapsing totally. 
I feel more secure in my ability to get home than if I am walking. I am certain people with M.E. recognise that anxiety!


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## albion (5 Aug 2017)

There we go, confirmation of what many already knew, that it is inflammatory reaction.

http://www.telegraph.co.uk/science/...ory-disease-blood-test-could-easily-diagnose/


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## bozmandb9 (6 Aug 2017)

Have you been tested for magnesium deficiency? The symptoms are very similar to ME. Apparently this is one of the most prevalent deficiencies, and many ME sufferers find Magnesium supplementation helps them immensely.


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## Hulot (26 Jul 2022)

gavgav said:


> I know of someone who suffers badly with ME and they use an electric bike, which does them a huge amount of good. An option maybe?


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