Very interesting thread, that’s all I have to say.

Sorry to hear that science officer
It’s not about the gp not spending money on expensive tests though. We aren’t billed for the blood tests we order. Yet

bigjim, I found that switching to lactose free milk and avoiding cream was enough dairy avoidance to make a huge difference to how I felt

I should try that stuff, in fact I will. Sitting here with a ridiculous stomach again.

Found this post while looking for a thread on cutting down carbon bars (found cutting down gluten).

I could write loads about this having had CFS/ME/PVF or whatever acronym you want to use this week.

I struggled for a few years after either Swine flu or a tick bite – not sure which now I look back.

Really tough period of my life and felt like my life was over, couldn’t ride, was signed off work, couldn’t walk down the street, couldn’t socialise and withdrew from my family as I couldn’t cope.

I did everything I could to fight back and find a route out of the situation I was in.

Interesting that Dr Myhill is mentioned, now I have recovered (wasn’t easy) I believe the mitochondria is a symptom rather than the cause. I also think nutrition is part of the resolution but not the whole answer. I’d also say there is no silver bullet. You also need to speak to the doc to rule out any other issues.

I could ramble on about this for weeks having learnt a whole load about this. If the OP wants to discuss I’m happy to go into more detail.

My advice would be to speak to the Optimum Health Clinic ( http://www.theoptimumhealthclinic.com/ ) THey are doing some amazing work and were the ones I eventually turned to and gave me the tools I needed to get where I am today.

Thanks for all the responses. Especially those that have had experiences. I just wanted to reiterate I didn’t say I have CFS.. I said I have fatigue on a daily basis which put me out of action for a month. (Off work)I’m now at the stage where I can do some things but it’s very ,very limited. I still can’t ride a bike or walk to town

I’ve researched a lot about causes and symptoms and I totally agree bushwhacked. The mitochondria dysfuntion is a symptom of fatigue ( I’ve read mldr myhill’s book)

I’m wondering if I had an adverse reaction to a tetanus jab? I’ve heard anacdoetally that some CFS sufferers have had adverse reactions to vaccinations.

I had a tetanus jab in November as the doctors weren’t sure if I’d had the right amount of injections as I’d stepped on a rusty nail at the allotment. When I got Ill at Christmas I didn’t have a fever, cold symptoms, runny nose etc.

But who knows . you continually search for answers whether it’s good for you or not.

I’ve found meditation has helped immensely. I’m now at the stage where 10 -15 minutes can feel like an hours sleep.

Start a new job in a few weeks, think I’ll have to discuss this with them. So glad I have an office job as there’s no way I could do a manual job in this condition

Think I’ll message some people privately .

Interested to know how you recovered bushwhacked and what you think caused it. Are you at 100% now?

Also went thru a lot of stress in December due to applying for a new job and the dilemma of leaving my very comfortable job with many perks coupled with me being the main earner in the house supporting my family

Theres no disease labbled “mitochondrial dysfunction” there are a group of mitochondrial disorders that effect about 5.7 per 100,000 people.

Are you one of those?

Where has anyone said it’s a disease? You really have trouble reading don’t you ?

Have you read any research papers on fatigue and mitochondria?

I have and most of them are itter rubbish. Dysfunction implies underlying disease.

The Hannah Poling case and the rebranding of autism by antivaccinationists as a mitochondrial disorder

http://scienceblogs.com/insolence/2008/08/22/why-the-whole-mitochondrial-disease-plus/

Theres some bits in there on fatigue as well, note how many of the fatigue researchers also crop up in fubious autism studiea.

Get checked out for hyperchondria instead.

And i regards to Myhill….

Dr Sarah Myhill exploited patients’ lack of medical knowledge by arousing ill-found fears for their health, say GMC

Lol

Tricky – happy to discuss, email me on barnt at hotmail com

Back to normal but carry some scars. But the good thing is I’m loving riding again – just had a great quick hour over lunch 🙂

Tom – so what would you do if you were me? I am still having some unexplained symptoms. I am at the end of what my GP can offer. Where do I go now?

I had an adverse reaction to tetanus jab as a wee kid and have never had another booster since despite ending up in a&e with various muddy holes in my body a fair few times, they won’t risk it again. I think the last time they reckoned the original childhood one was enough to see you through anyway.

Interesting about the meditation, I know a few people that get a lot from it but I struggle even to do the relaxing bit at the end of a yoga class, just can’t turn the brain off.

I wish the mods would ban some of the trolls on here.

I’ve been a big user of Headspace.com for a few years. Great way to relax and if you can’t switch off keep practicing. I read a great book a few years back saying that irrespective of your form of meditation it is about training to mind to focus on one thing so it allows the mind to stop racing around.

trickydisco – its interesting that you mentioned a few stressful things that were happening before you got fatigued.
Several years ago when I fell ill, there had been 3 very stressful incidents that occurred beforehand. This convinces me that the body sort of shuts down for a while. Hth.

I’ve found meditation has helped immensely. I’m now at the stage where 10 -15 minutes can feel like an hours sleep.

Good to hear you have started meditating.

I have suffered from chronic fatigue (Not CFS) for many years and this is one of the things that has been most beneficial.

To be frank the NHS and traditional western medicine is shit for a lot of chronic health problems. Great if you have broken something, been in a car accident or have a virus they know how to treat.

Useless if you have had a load of tests and they can’t find anything wrong with you.

Complementary and alternative health can be helpful, but it can be hard to find people who really know what they are doing.

tjagain – Member
Tom – so what would you do if you were me? I am still having some unexplained symptoms. I am at the end of what my GP can offer. Where do I go now?

I’m fatigued all the time, heavy legs up the stairs etc etc… I get home feeling a mix of totally knackered and jacked up like Im on coke. You’re a nurse aren’t you TJ? Probably work stupid hours like me, yeah? Then commute? Spend most of your life indoors in synethetically lit rooms?

Humans aren’t meant to work 37.5 hours a week…let alone 50…70…

My suggestion is change your lifestyle, think about how happy you are….

Some of the docs here mentioned shit life sydrome, I suspect they are right.

And quit reading random research publications on the net, if its about you, you can’t be objective and you’ll end up worrying yourself in to worse health.

Meditation is probably a good idea as well…I bet some of you have deranged fight or flight responses. We evolved with a lot of threats in our environment, now we have very little but our brains are costantly on the look out fir them. I suspect that humans arent designed to cope with how safe pur luves are, we slowly lose our threat objectivity and we end up seeing it everywhere and our fight or flight mechanism gets permanently switched on. That will tire you – but hey….this is my unevidenced OPINION.

Tom – I am not under either physical or mental stress. I spend on average 20+ hours a week outside. I am happier than I have ever been in my life. Life is good. Its not shit life syndrome. It even used to happen when I was working an average of 15 hrs a week

My GP suggested it wasn’t in my head and was something physical but that it was in the huge unknown areas in medicine. He offered me an appointment with the infectious diseases specialist or antidepressants which he reckons work in some cases of fatigue without the person being depressed

I don’t worry about it at all. I don’t go around reading up on stuff and worrying myself ill

good point about the fight or flight reflex – but it don’t apply to me – the cycle commute burns off all the stress hormones and anyway as I said I am confident its not stress / anxiety or depression related.

I believe there are a whole series of issues that lead to these fatigued states and probably many causes physical and mental

Yeah TJ, it’s worth noting that CFS IS a huge unknown and there is a strong possibility that many cases are physical – but good medical researchers are looking into it – Myhill etc are not these researchers and they’re a pet peeve of mine. From the CFS sufferers point of view, these cranks turn their suffering into a joke amongst other researchers as well.

I apologise for being a bit of a dick about it.

I hope your issues resolve themselves soon.

Been decades Tom. I suspect it will be with me until I die

thanks for the apology. I share your irritation with voodoo medicine but there is some good stuff out there about alternative diagnoses and causes if you sort thru the chaff its about 95% noise to 5% stuff worth thinking about – fortunately my background gives me some ammo yo sort out which is which

Back to me for a mo – I think its immune system related. Glandular fever possibly as a kid, tick bite untreated as a teen, black widow spider bite in my 30s

Interestingly the night sweats seem to have stopped with vit D

TJagain – Sorry to hear that, I used to think that way and it’s a crap place to be. For me sleep was (and to a degree still is in a small way) a problem but it’s now a something I don’t worry about and have ways of coping that don’t really cause any issues (hence my reference to scars previously)

Haven’t read this post for quite a while. I still have Chronic fatigue (it’s now been 11 months) but thankfully the symptoms have reduced to the point i can do a desk job.

What do the naysayers think of the article in new scientist recently

https://www.newscientist.com/article/2152357-blood-cells-in-chronic-fatigue-syndrome-are-drained-of-energy/

Tomas and her colleagues measured the efficiency of mitochondria, the energy-generating powerhouses in cells. The mitochondria are the dominant source of energy for all of our cells. The team found that mitochondria in CFS cells can’t produce energy properly.

“We’ve shown definitively that it’s a fault in mitochondria,” says Tomas. “It points directly to a physiological, not psychological disorder.”

So what do you say to that Tom_W1987? Are these researchers also Quacks?

I’ve massive sympathy with you. I had M.E./CFS/chronic fatigue for about 6yrs,and got little help from the NHS as frankly they did all they could. Blood tests normal except slight under active thyroid (fixed), some cognitive therapy as part of a study (presumably under the “it’s in your head” remit), etc. Exasperated I tried homeopathy, “reverse therapy” (where I at least learnt working in recruitment was my thing) before I learned about “Perrin technique”.

My first visit was life changing. I had a massive reaction to this lymphatic massage technique. I ached, was tired and had brain fog like the worst days of my illness. Worse than that even. I slept. Back again a week later and a similar but less drastic experience and so on. Within a few months I felt I could do more. Within a year, I was able to do longish hikes. Within 2yrs,more. And before 6yrs start to end, I was back on the bike.

That’s rather a potted history but my summation is that I ride, race, drink and eat when and as I want nowadays and apart from a slow recovery from colds, I’m A1.

I also suspect ME has gotten a bad name as it’s become the catch all for all manner of undiagnosed illnesses from mental to physical.

Mental and physical fatigue have had a major influencing effect on my life for a lot of the last ~25 years, mostly down to Seasonal Affective Disorder but also an underlying general depression.

While I’ve known for a long time that getting outdoors would help alleviate symptoms, which is the major reason I became a postie ~8 years ago, for almost all of the last 25 years I’ve been awful at simply going out for the sake of going out. If I had a purpose, like we needed some groceries, I’d pop out and get them. But by and large, I’ve been a hermit/recluse, hiding away from the world indoors as much as I could.

“Discovering” the outdoors through recreational (rather than just commute) cycling has helped me massively this year. Now my SAD symptoms are getting harder, it’s nowhere near as easy to kick myself out of the house as it was back in mid summer, often leaving it very late to pop out not long before sunset… But even a shorter blast that planned like yesterday is better than no blast at all!
https://www.strava.com/activities/1295475034

Lymphatics glands permanently inflamed, night sweats to name two.

TJ – I take it your doc has had a full blood count done on you. When you say inflamed lymph nodes, do you mean painful to touch or hard painless lumps?

I recently had some private tests done which are very interesting. One is an ATP profile which measures mitochondrial function

This test measures various aspects of mitochondrial function relating to ATP and ADP in neutrophils: whole cell
ATP, ATP related magnesium, ADP-ATP reconversion efficiency, percentage toxic blocking of active sites and
translocator protein. From the results one can calculate a very approximate overall mitochondrial function score.

the results showed i had very low level ATP and very poor provision of ATP.

>n0b0dy0ftheg0at

Did you try supplementing with d3 at all?

No, tried St. Johns Wart and 5-HTP for a while, the former made me extremely sensitive to any light and the latter had no noticeable effect either way. I’ve got a Pharos Max lightbox, was one of the best on the market in 2006, no idea how it compares to the modern compact blue light gizmos.

martinhutch – Member

Lymphatics glands permanently inflamed, night sweats to name two.

TJ – I take it your doc has had a full blood count done on you. When you say inflamed lymph nodes, do you mean painful to touch or hard painless lumps? [/quote]

Not painful but I am aware of them. Every blood test imaginable

Not painful but I am aware of them. Every blood test imaginable

Where in the range do the numbers fall? If towards the bottom then won’t be optimal.

Not painful but I am aware of them. Every blood test imaginable

How long have you noticed the lymph nodes being enlarged? Is it just in the neck, or did the GP check armpit and groin as well?

For my own peace of mind if I had persistent lymphadenopathy, fatigue and night sweats I’d want to be referred to haematology for a checkover, even with apparently normal FBC.

Evidence supporting a link between dental amalgams and chronic illness, fatigue, depression, anxiety, and suicide

Certainly interesting reading. This was the result of my Lymphocyte sensitivity test

Have you tried any of this stuff? https://www.amazon.co.uk/Doctors-Best-Absorption-CoQ10-Veggie/dp/B00EL74P2C/ref=cm_cr_arp_d_product_top?ie=UTF8

Have you tried any of this stuff? https://www.amazon.co.uk/Doctors-Best-Absorption-CoQ10-Veggie/dp/B00EL74P2C/ref=cm_cr_arp_d_product_top?ie=UTF8

Yep, i’m taking a range of supplements which are helping. heres the results of my ATP profile test