CFS Specialists in the uk

IBS/gut issues are diet related.

I have spoken with a lot of so called specialists in me/cfs not sure why a lot of them get that title no true qualification for it also the guidelines they work by are broken.

original poster sounds depressed which happens to people when they get sick so I would advise to do your own thing which first is look at your diet that is so important yet it is neglected.

Hi beverley

Yes I've heard gut health can often play a big part in overall health in general so I would be curious to know how you get on with that.

No I don't think you did mention that supplement - is it an iron supplement of some kind?

Supplements don't seem to have any impact with me, I'm suspecting some sort of absorption issue.

Xx

Hi,

Yes it is a liquid Iron and vitamins that are deemed good for fatigue and tiredness so I started taking it because I am useless at remembering suppliments. you take a spoon morning and evening. I actually initially bought some for my daughter and she wasn't impressed. The one I get has q10 and ginseng in too. I think a lot of things take time for them to get into your system.

I will let you know how I go with the gut health. my friend looked fantastic and has had issues for years with Candida and hystermine problems. She's cut out wheat and dairy too (which I already don't have) so probably a mixture of things. I am hoping it works for me too.

Beverley

Thanks for the advice I'll give that a go as I tend to do better with liquid supplements than solid ones. Good luck with the gut health stuff and hope it works for you x

Thanks Bob, yes I completely agree with you. A lot of this seems to be a waste of time, and what you have suggested sounds the best way of making the most of a bad situation. Thanks for the reply.

Take care

I do think being kind to yourself is very important, but don't lose all hope of getting better. I've had CFS for 12 years so far. If I gave up on thinking I'll ever get better, I think I'd just shrivel up and die in the corner. There are things that have helped me/increased my energy over the years and in the last. Obviously things are gonna take take time to heal with a long term thing like CFS for anyone, but I think there are things that help. Some things just require more mental effort to stick to than others.

Yes I know it's not especially helpful when you are feeling low and I am not suggesting people shouldn't try stuff in the hope of some improvement.

Making the most of my situation is pretty much where my search has led me though and that's OK. In the end it made sense that if I try to treat myself better, maybe it would help. I'm not always very good at it though. 😃

No I didn't think you were saying that at all 😃 I am just at the point where I have tried so much now and running out of things that I could try so I don't think I'll waste anymore time on certain things and what you say makes a lot of sense

What kind of things have you tried so far?

So many things I have probably missed some but here's the ones I can remember: a range of dietary adjustments metabolic balance diet, autoimmune diets, paleo diets, cutting out sugar, cutting out gluten etc, reiki, acupuncture, osteopathy, bowen, reflexology, gut parasite protocol, so many different supplements I couldn't possibly list them all, so many different tests including heavy metals toxicity, trying 4 different types of thyroid hormone alongside progesterone to combat oestrogen dominance (I have an underactive thyroid as well), all kinds of therapy including counselling, hypnosis, edmr... The list just goes on and on.

I haven't lost hope but when I look back I'm skeptical that anything really helped over and above good rest and treating the illness with respect. Did the Q10 I took for 5 years help? Or the herbs or B vitamins I took for years? Maybe, but I'm not so sure.

Since stopping this stuff I've really noticed no difference.

I agree with you Bob - I think it's safe to say that there's money to be made at the expense of the chronically ill. Particularly where supplements are concerned.

Hi Bob,

Just curious as to how long you were taking things, when you stopped taking them and when you noticed no difference? takes 6 years for vitamin B12 to be deficient.

I have noticed in myself that my walking is much worse but my brain fog not as bad this last year and a half. I have been taking feroglobin is one thing that changed as well as losing too people close to me who were quite demanding psychologically. Stress wise has been a 10 because of GCSEs and a daughter on the spectrum but, I still feel the Feroglobin is helpful. I am not looking for a cure, I am looking for things to settle enough for me to be able to rest and pace at a much better rate. At presrnt I have been crashing every second day. bed bound crashing. That's when I noticed I had stopped taking the Feroglobin and clicked that I aren't resting so well either.

I have heard people recover by drinking Aloe Vera water. Some people see improvements via accupuncture, others don't. We are all different and we got cfs/me differently and our paths to recovery will no doubt be different too.

last year I saw a physio who told me I am not well enough yet to start exercising because I am already doing too much by just trying to live my life with 4 kids and the demands that brings. This was after trying to do some exercise in the pool and a bit of swimming which resulted in a 10 day recovery. I did so little and the resulting payback was beyond obscene!

Resting and pacing is the way forward for me and eating the best I can.

Beverley

that is a lot of stuff. Have you tried going vegan for at least 3 months? My CFS has improved a bit since I went vegan and also removed 90% of my IBS symptoms (I'd had IBS for my whole life).

Hi there the thought briefly crossed my mind but I am intolerant to a lot of pulses and things that I would use as a meat substitute so my diet would be so restricted it would likely do more harm than good. May be a contraversial opinion but I really don't think diet alone can cure this horrible condition anyway (although i definitely see your point and I know for sure that certain foods worsen symptoms).

Thanks for your reply

Are you intolerant to soya, tempeh or seitan? Contraversial indeed as your stomach/gut is the engine that powers your body. When you drive a car, if the engine has a problem, the car either fails completely or will run at a lower efficiency and then continue to damage itself until it fails. A nice comparison I think, but the science and numerous studies provide the evidence with it.

Either way, even if you don't think one's diet alone can cure it, if you haven't tried it, then I would definitely try it as something new and something to put some hope into as a possible cure or just to improve it.

I did reply to you Beverley but for some reason it got moderated 1984 stylee.

In short I took my supplements continuously for 4 years.

Hi Bob,

when I started with all this and didn't know it was cfs/me, I tried to carry on as I believed everything was from the car crash. As things didn't improve, and even started to get worse, I didn't really know much about what could improve/make worse the cards I had been dealt. After getting referred to the cfs/me service, I realised how things I was doing were greatly affecting my recovery. The list of activities that cause issues are kind of small to those without this: Brushing hair;watching TV; reading; peeling vegetables; all these are red activities. Things that give payback but, we don't notice then accumulating. The idea is rest after these. But , how hard is this!We have to retrain our brain. In the same way, we have to retrain our whole system. I got IBS from this too. from being "normal" to looking nine months pregnant after a meal isn't pleasant! My body now reacts to something that I have eaten before all this and I have yet to conquer that one. In between, I take multi vitamins as I hope it will help. I eventually switch to organic where I can. I feel something is a bit different but I am not cured. I have payback constantly and bed bound days. My partner is not understanding, I find their constant lack of support and sabotage an extra thing to deal with. It is a rocky road with them and when they split with me (because I am always ill, was one of the things they said, wow eh?) It actually helped. I cut down on eating junk food and end up not drinking alcohol. Two things that was a huge part of the relationship. I started taking Feroglobin that dissolves in water and took it because I felt I wasn't eating the best I could and did this about a year-on/off. I don't know how much this was helping as I switched to organic veg too. I then changed to the liquid feroglobin and then to their Plus version which has the ginseng and Q10 in there. I am not cured. How I see myself is, I was carrying a lot of stress with the ex partner. Carrying a lot of stress by being a single mum with 4 children and then just by the nature of this awful condition, carrying the guilt of not being able to do things. My pain was and still is awful when in full throw. But, this has lessened. I have stopped walking as much. I used to have to get the bus with my daughter (after an incident linked to her SEN needs) to school and walk up there about 10 mins. This was excruciating. I do not know how I got through it, sometimes having to get my older children to take/pick them up. Getting a car, walking less, the feroglobin, organic veg, resting more, less stress- All this has helped I feel but, I am not cured. I do feel though that my pain is less. Not gone, but less and I can feel it coming. my brain fog is less right now too. If I do too much, super pain and super brainfog of course! I have cfs/me and I have to balance things or else.

Is there anything that has helped things become less for you? Is there anything you could change that might help?

Beverley

I'm not sure what I said in my last response to be moderated so not sure if this will as well but I was very lucky. I was able to stop work, I had to really, and our youngest was already at Uni. I can't imagine how hard it must be with 4 children.

My ME was severe for the first two years. I don't remember much but my wife said most of the time I couldn't even communicate with her. Now it swings from moderate to sometimes severe but thankfully less of the latter.

At this point I feel I have tried everything (it's funny you mention guilt as you get it from the ME community as well. When you say you have tried something and it didn't help people almost don't believe you because it helped them and say did you try it for long enough etc).

There were times when I thought maybe Q10 or some other supplement helped but now I am not sure. On the one hand we are told it's a multi systemic chronic illness and then on the other you hear people being cured just by changing their diet. You don't hear these things so much with other illnesses and I think it adds to the stigma ME has. As suggested I feel that I was lucky and was able to rest with little pressure other than what I put on myself, that was why I was able to recover to where I am now.

You mentioned stress and I think it is the one key worst thing for us. Our bodies are already constantly on alert trying to fight something (that's how mine feels anyway) and when I am stressed it's all much much worse. More so than periods where I've eaten poorly for example.

I think diet and what not are important. I haven't drunk alcohol since I fell ill and if I was to try another diet, which I am considering at the moment, it would be something like keto or paleo as that makes more sense to me seeing as humans evolved eating that way.

Rest, try to be kind to your body, less stress as you said seems a good strategy, especially the stress part.

Hi Bob,

I was moderate/severe from the start but was injured so had to rest. it seems that Cfs/me is a multi system issue and I agree it's difficult to grasp how some people recover or partially recover, some get worse and others stay the same. There really seems no rhyme or reason. I think that is the frustrating part for so many. I also get slightly perturbed that the funding goes into fighting the viral causes of the condition which seems to drop people like me by the wayside. I know of a few people who didn't get this post virally. E.g. someone after surgery. How can anti virals help us?

Guilt is such a part of this yes, I totally agree. Expectations from ourself and others are to get well and get well as soon as we can. There are even time markers of :2,5,7,10,15,20 etc years. Recovery supposedly better the less you have this but, then there is relaspe! I have a friend whose partner had it for 10 years and recovered and is a personal trainer. My next door neighbours niece had it 2 years, changed her diet and recovered. So many recovery stories out there which give us hope. But, there is no concrete cure.

I think also, people want to help so much and think it could ve something else so believe it could it be: lymes/hashimoto's/a liver condition/vitamin d deficiency/ lupus etc etc as many share symptoms . Maybe because there are things that help those conditions but nothing for cfs/me.

We can only do the best we can for us and if it works-let others know.

It can be frustrating when others in the community ask have you tried this?or this??? ! When you feel you have exhausted everything when the only clinical evidence is to rest and pace. I remember my Dr, about 2 yrs in to it, gently saying anti depressants help some with cfs/me. I aren't depressed and am not going to try anti d's unless I am. I was much more brain fog at the time so I didn't even think to ask "help how?"

Diet wise, I think we have to go with what feels right? I haven't eaten meat for over 30 years and can't see me ever thinking that could help me as I get the vitamins and minerals I need from what I eat. I do think I need to change my diet to work out what is causing the bloating though. I may even look at naturopathy if I need help finding out what to eliminate etc as I don't have the usual suspects of wheat and milk either as I was intolerant to these before cfs/me.

I hope your change in diet helps you if you do try the paleo way. You can get paleo snack bars even these days which I guess is good for a quick boost.

Today is an in day for me. I have done too much and I have got an injury in my back from nowhere? literally was laid on the settee yesterday and it just happened, hoping it goes as quickly as it came! At present I am resting in bed, it is early doors.

Can I ask, does watching too much TV or using the computer bother you? I can't have too much screen time myself as it affects me with brain fog and flu like symptoms!

Beverley

I know this is probably not the popular view but I don't think that someone who claims to have cured ME with diet, had ME. Or at least, not what ME is for me. I'm sure they were ill, but none of us really know what we have. ME is just a box they put us in because Dr's have no clue.

The problem with a large group of people with an unidentified illness that have symptoms that cross over is that because there has been so little research, we all get put in the same box. It's possible that we have a number of different illnesses that just have symptoms that are similar. Not the popular view I know and may offend some but if it was diet to such an extent that you can be cured by it, we would all be a lot better by now.

I do think diet is important but it has to feel logical. We evolved on animal fat and protein and so for me personally, that is the way we should be eating. I know vegetarianism works for some but when it didn't for me, it just felt wrong and I was going against what my body wanted. Cutting out the rubbish is key but depending on my mood it's tough. 😃 I'm trying some moderate fasting today. Had breakfast early and will now wait until dinner before I eat again. It's pretty tame by fasting standards but it does help when I do it and I like the research I have read about fasting. I just don't have the energy to do it properly.

I couldn't use a computer or TV for about 2 years which was tough as my computer was my life. Now I can in limited amounts and I found using glasses by a company called Gunnar help a lot. They are advertised as gaming glasses but really help me look at a screen longer.

Are you in the UK? I was also offered anti-depressants but turned them down. I found out later it's general practice as they still think ME is mostly still in the head.

I completely agree with your point here! I do think because the cause is unknown, a lot of people who don't have m.e. Get misdiagnosed and may just have food intolerances or other issues like coeliac disease perhaps,then you get these quacks claiming they have cured an (on the whole) incurable illness. Diet does play an important part in everyone's wellbeing but I completely agree that it's not a cure.

Hi Bob,

I think we all have different routes into cfs/me and no doubt different routes out? There are 3 levels, as you know severe, moderate and mild. The niece with diet alone got it post virally, was moderate severe and had it 2 years. I am guessing resting and pacing helped too? For it to be classed as cfs/me, there has to be a set of criteria that a person fits. The body/mind has to experience trauma. The body/mind then overprotects the system and we are left exhausted with symptoms that make it hard to live a normal life.

By definition we are omnivores not carnivores and have a much better survival chance because of this which is probably why we have survived so long as a species as we have the choice. I myself never liked meat. When I became a young teen I stopped eating it. My body does not crave it, never has so , I am happy with my food intake. I did used to crave wheat though and would eat it and then my body would react to it but that was a long , long time ago. The last time I craved it was over 20 years ago and I was totally disappointed with the taste almost slimy, weird how our taste buds change!

I haven't heard of gaming glasses, may be worth a shot. Yes, in the UK. Did you get yours post virally?

Beverley

'I know this is probably not the popular view but I don't think that someone who claims to have cured ME with diet, had ME.' That's a pretty harsh thing to say bob1970. If someone has CFS/ME and finds that a particular diet cures them, then this should be celebrated or at least acknowledged as a good thing. Calling them/their CFS/ME disingenuous by anyone, let alone someone else with CFS/ME just makes me think that you harbour anger at them because what worked for them didn't work for you and that you've closed the door on ever thinking you'll get better, which is a shame.

I never called anyone's ME disingenuous. If you study ME you should know that it is a category of people that general medicine can find nothing wrong with and so we all get lumped under one banner. It seems logical that groups of us all have different illnesses or underlying issues as yet undiscovered.

From the MEAction page:

*Myalgic Encephalomyelitis (ME) is a systemic neuroimmune condition characterized by post-exertional malaise (a reduction in functioning and a severe worsening of symptoms after even minimal exertion). It causes dysregulation of the immune, nervous, and energy metabolism systems. The effects of ME are devastating enough to leave 25% of patients housebound or bedbound.

All people with ME experience a substantial loss of physical or cognitive functioning, but there is a spectrum of severity. The typical ME patient scores more poorly on quality of life surveys than those with multiple sclerosis, stroke, diabetes, renal failure, lung disease, heart failure, and various cancers. Onset can be either sudden or gradual, and the intensity or frequency of specific symptoms can wax and wane. While symptoms can fluctuate significantly from day-to-day, shifts in overall wellness should be measured in years, not weeks or months.

The above from MEAction is my experience with ME and it is not cured by dieting. It has nothing to do with anger but everything to do with science, and what the science, of which there is little so far but more all the time, tells us. The psychology you often here that you have used on me saying I've closed the door on ever getting better also belongs in the dark ages of ME past. What I have is real and has not been cured by dieting and neither has it for hundreds of thousands of others.

If diet has cured people of an illness then that is great and we should only feel happy for them but it has not cured what I experience everyday as ME. ME is far far too complex to be cured just by dieting. Sorry that offends you so but it is my opinion.

I aren't sure Bob, yes it's complex but that is the thing, we do not know how it gets better. like David who found a cure by living in the south of France! I mean, what are the variables? What changed for him by moving there? without handing him a questionnaire, how would we know? and if we knew that moving there would cure us or even some of us, would we move there on that? How many of us could? But, it worked for him-this complex condition and yet moving away cured him.

I was given a whole body of blood tests that had to come back normal and I fill the criteria for having cfs/me. My system has been altered due to the crash. My immune system changed, random pain , twitching, brain fog etc etc etc I completely believe I can get better and frankly, If I get better by diet then I will not think I didn't have cfs/me to start with but, I think as it is a multi system condition, I feel it needs a multi system recovery that I find hard to put into practice right now because the resting and pacing I haven't hit my bottom line for yet.

We all have it on here which is why we are replying to each other. We all want to recover, spontaneous recovery with cfs/me is still a thing!!!!

Let's not forget we're on the same boat , all of us.

Beverley

I don't believe that whatever David had is what I have and that's the point I was making. I've spent time living in France and Italy and it didn't help one bit.

It has been shown that some people who get a diagnosis of ME, which isn't really a diagnosis as all they are doing is saying we don't know what's wrong with you, have gone on to discover that the condition they had was not ME. People have found out they had Lyme Disease, numerous viruses, infections etc.

Recently ME filmmaker Jennifer Brea was cured because her condition was caused by a cranium and spinal problem that was operated on. I guess it comes down to classification. Did Jen in fact have ME? If we still think she did then what we are saying is that ME is not an illness, but a set of symptoms we experience until we find out exactly what is wrong with us. If I found out tomorrow I actually have Lyme Disease or Cranial Stem problems for example I would not say I had had ME but Lyme Disease that was undiscovered until then.

What we all have in common here is that we have an illness that has not been discovered by medicine. Some of us may go on to discover what was actually wrong with us like Jen did.

That's a really good explanation

I think sometimes we can get over sensitive. I know I have done it before.

When you say "what this person did hasn't cured me so this is not what I have", for some reason people see it as you saying this person wasn't really ill. They absolutely were clearly ill and we had similar symptoms but not the same illness. My so called NHS ME specialist basically said to me that we can't find anything wrong with you, you have similar symptoms to this, so we are going to what we do to everyone in your situation and diagnose you with ME.

I think in 50 years time all of us who have been put in the ME box will find that we can be split up in to various groups of different illnesses with similar symptoms.

Hi,

I just need to clarify here. Are you saying that people with ME cannot recover? The picture I am getting is that if people recover, they didn't have ME in the first place, is that right? Or are you saying ME doesn't exist, we all just have similar symptoms with something else wrong with us?

Just one example that I want to put forward. Dr James Sheppard had ME and recovered, or did he have something else? He's a Dr so I would hope he knows what he had and I would imagine he did research and saw specialists. He now advocates for us.

I thought people were on the same page with this condition so I guess I wasn't aware of the fact some people have such different views regarding if we even have the condition.

Beverley

meant to say bob !

Sorry the less wordy version is yes I think people recover. I became friends with someone through ME who's body seemed to just heal itself over many many years. The body is an amazing thing and that seems more logical than to me than a move to France curing your multi systemic illness. I guess until there is treatment my biggest hope is that my body sorts it out on it's own or at least partially like it did for Dr Sheppard.

Dr Sheppard is the same as the rest of us though as there is no test yet to determine if we have it or to even tell us what it is or what causes it. As far as I know he never had a test to determine what he had so like the rest of us, you get diagnosed with ME. His body sorted some of it out over many many years like my friend although I believe he said he is only 60-70% of what he was (which is still great, I would be very happy with that at the moment).

Maybe your diagnosis was different but in the UK it is a process of elimination. My Dr's literally said we can't find anything wrong with you, you match the symptoms for ME, so that is what we are going to diagnose you with. I went away and did research on it and thought yes, this is what I have. Then I heard stories on a daily basis of people finding out it was this or that that was causing their symptoms and I realised that there is a lot more to this and it is a lot more complicated.

At the moment I think I have ME as that is all I have to go on but I wouldn't be at all surprised to find out in the future that actually what I had was x or y illness that was causing the symptoms I have. I also think a percentage of us will fall under a proper ME category as eventually we will hopefully have tests that will link us together with the same causes.

What do you think ME is or could be and do you think people like Jen Brea actually had ME? If we find a cause for the symptoms we have that are not the same as everyone else it is still ME?

If you saying 'I know this is probably not the popular view but I don't think that someone who claims to have cured ME with diet, had ME' isn't calling anyone who makes a recovery or significant improvement disingenuous, then I don't know what is.

Thanks for pasting in the information, but I'm aware of what CFS/ME is thanks. You say I was 'using psychology on you', like it's some spell; I was just putting across what I thought when reading what you'd said. It doesn't offend me, I'm just struggling to make sense of the fact that you're quoting all this scientific stuff, but then say illnesses can't be cured by diets, which is weird because the stomach/gut is the core of the human body in production and healing and so much can be achieved through diet alone. Have you tried the vegan diet to see if that helped?

I did yes and it didn't help. Just in my opinion but a vegan diet is not especially healthy as it cuts out nutrients from animal protein and fat that we evolved on.

ME is far more complex than simply dieting it away but again that is my opinion. I did also say cure and not make improvement. I felt better eating a lower carb higher fat diet but it doesn't get anywhere near curing or even significantly improving me. It just helps my system to feel less like it is waging a war.

Like you and everyone here no doubt I have done a lot of research over the years and am aware of how important the gut is and no, I don't think it can cure what I have. Something else probably but as I said none of us really know what we have. If it significantly helped or cures you then great!

Hi Bob,

I live in the UK. I was referred to the cfs/me specialist service where I got my diagnosis. I was not given the we don't know what it is so let's say it is ME.

I think it is caused by trauma of some kind (virus, surgery, pregnancy etc etc etc) which causes the body to react in an over protective way which shuts it down to some extent. Was yours post viral like many on here? Everything is fighting to keep the system protected but at the same time people try to be normal which gives payback.

I believe cfs/me is a stand alone condition which shares some symptoms with other conditions, but don't most conditions do that?

I remember someone I used to private message on here who got extreme fatigue after Chemotherapy. For months the GP, specialists all looking for an answer. The symptoms were the same but their blood tests did not come back normal. That is the main marker we have for it to be cfs/me.

I also think we can have cfs/me as well as other conditions not either/ or. I also, as said before, believe in spontaneous recovery.

Beverley

Are you saying this persons blood tests didn't come back normal and that was what marked it as ME? To a person everyone I have ever spoken to who was diagnosed, their ME was not diagnosed with a blood test or any other test but based on elimination and symptoms.

One of the criteria in the UK is "not explained by other conditions" so they can find nothing else wrong with you that would cause the symptoms. Part of the reason you and I would have been referred to a ME specialist is because they could find no other cause for the symptoms.

I think it has been proven many times that patients have been diagnosed with ME and it has turned out to be something completely different causing the symptoms further down the line.

I'm more inclined to think ME is a mitochondria issue or if you look at the direct definition of ME, encephalomyelitis means inflammation of the brain and spine and there have been a number of ME patients in Scandinavia I think who showed signs of brain and spine swelling during as study.

Sorry for the massive derail of your post. I guess it's healthy that we don't all have the same opinion about things.

How long did you try it for? And were you strict with it? Well, as I've said and heard many times before, you can get your supplements in two ways: you either get them from supplements bought from shops or you get them from animals being injected with them artificially through farming. I still get all the nutrition, fat and protein I require as a human, but like you said, humans have been evolving for years, which is why we have evolved to a point where protein, nutrients and fat no longer need to be produced from animals.

ME might be far more complex for you for a permanent/lifestyle diet, but that doesn't mean other people can't see significant improvements through diet alone.

You've reinforced the point I made and something that happens a lot on ME forums. Because I have said that something that worked for you didn't work for me you ask how long I tried it for and if I was strict, almost as though you don't believe it didn't help me. I see this a lot, especially with the vegan thing as though it's some catch all for health.

At this point I think it is safe to assume, after many years, that we have all done our homework.

We'll have to agree to disagree with the nutrients side. I'd much rather get them naturally, from grass fed animals preferably, than from a pill.

Only as much as you've already reinforced my point. I wouldn't ask most people, but you seem to be so immersed in trying to prove that ME isn't curable that you've given up all hope in trying to cure/improve the your own/symptoms of it.

Following on from that, I do find it hard to remain objective regarding veganism sometimes as I only went vegan for the animals, not for health of environmental reasons. Now that humans have evolved to the point where protein rich, tasty foods can be produced without animals, I'd say I struggle to see how anyone would not go vegan knowing that all the animal abuse and torture that happens in the meat and dairy industry can be avoided.

Sure, but getting them from animals isn't natural, as you only get them from animals because they are artificially injected with them. Getting them from a pill/pills is just as natural, if not moreso.

If you can look back and find where I said ME wasn't curable, I'll eat my own toes. I said I do not think ME is curable with diet alone or moving country, but nothing else.

I'm lost on your point about getting vitamins, minerals and other nutrients only from animals that are artificially injected with them. Organic, grass fed animal fat and meat that have not been injected with anything naturally contain vitamins, protein and minerals. That's just science. The injection thing just sounds like vegan hyperbole.

'I know this is probably not the popular view but I don't think that someone who claims to have cured ME with diet, had ME.' There it is: that's you saying people who have found a cure for it through diet didn't have it in the first place.

Your statement about organic meat is true, but the majority of people eat non-organic meat. The only supplement I take artificially is a B12 oral spray. I do also take a supplement for iron, but that's due to anaemia issues I've had since childhood (I didn't go vegan until well into adulthood). I wouldn't call it hyperbole, but I would say most meat eaters anti vegan arguments are hyperbole.

Hi Bob,

firstly, to be admitted to the cfs/me service in my area of the UK (and many others here ) you HAVE to have blood tests that come back normal, you have to or you can't be admitted to the service. once there, they go through your history, what may have been the "trigger" and what you can expect from the service. They give you a series of booklets to help on a practical level , for family and friends as well as for yourself. A sleep activity diary and you get a series of appointments. Have you been admitted to such a service in your years of having cfs/me?

The blood tests are specifically to outrule OTHER causes. You have ab normal result, you go to investigate that. However, I believe that having this condition can cause other conditions or should I say gives us a broken system that allows our body to be more suseptable?like those on here with interecestial cystitis or cluster headaches that they didn't have before cfs/me? Both are stand alone conditions but people on here in the past have mentioned them as being "their" symptoms. Not everyone with cfs/me has them or will get these.

The person I spoke of had the same symptoms as many of us have and their blood test came back with a result that gave a positive result for something else. Someone else found they had MS these are through blood tests. As said above, for it to be cfs/me you need a normal result.

I 100% believe I have failure at mitrochondria level. These are our mini engines, what fires us so, when we do normal things our body reacts like we have run a marathon on no sleep whilst drunk. But it doesn't stop there? I believe my gut has been affected too infact, my digestive system as a whole. My sympathetic and parasympathetic nervous system are also affected. Our whole system is changed in an effort to protect itself.

Beverley

So I said I felt ME wasn't curable by diet, not that it wasn't curable at all or that I had given up hope of a cure or that I was trying to prove it wasn't curable. So you made that up basically.

At this point I just think you are a bit of a troll and I should have realised it earlier. When you started making up stuff that I had said to suit your argument and began questioning peoples methods because you couldn't deal with the fact that the vegan agenda you are trying to push didn't work. Realising that I bid you adieu and will use my energy for something more constructive.

I made nothing up, I was only suggesting things that could help and discussing the subject with you, so I think you're the troll here. You're the one who said that people who had cured/significantly improved their ME with diet alone didn't have it. I never said that and I think it's great that people with ME can get better by any means. Like I said earlier, I only promote veganism on here because it has helped with my ME and hope that it can help other people too. Sure, I'm happy to end it here as you've run out of constructive things to say.