ME/CFS (ME: commonly known as Chronic Fatigue Syndrome)

Hi Jan,

I'm 56 and I've been vegetarian for 37 years. This last year I've followed a vegan diet, although not raw and have had a very limited intake of sugar (a slice of Christmas cake is all) sadly I have felt no improvement in the ME/CFS.

I'm with you on a winter with no warming soup, gosh that'll be a struggle. 😞.

Sarah

Hi Jan, It's lovely to hear from you!

Firstly, it is fantastic that you say, 'You have improved greatly!'

Hold on to that!

I kept a diary for the first 2yrs and when I felt hopeless, I read it and realised how much I'd improved - small things like eating a meal 😉)

My employers kept the pressure on me for those first 2yrs, visiting me at home every month ... then they 'let me go'. So ...

I empathise with your 'anger' and of course the frustration that goes with that. You are in an early stage of your illness and this is to be expected. I felt angry for the first 2 or 3 yrs! Anger per sa isn't good as it robs us of our precious energy - and of feeling better. But it's a natural emotion none the less. A vital stage we must acknowledge and hopefully, pass through. Understandable.

To answer your question directly, Jan, Yes, I have lived my life with food as medicine. I have been Veggie for 35 of those 60 yrs - and a healthy veggie too, not junk food.

I have always been active: swimming, cycling, rambling ... and it kept me sane.

I have passed through the stages of anger, depression (I do not suffer depression), and grief for all I have lost: career, home, friends and a partner. But without going into too much detail, I am now in a good place of acceptance. For this alone is what I now believe will help me heal: progression, positivity are all I hope for day to day. The rest will come.

In addition: I personally don't believe that any restrictive diet will heal me. Of course eating healthily will do us nothing but good! And our individual preferences must be respected. This aside, Jan, I know too many with ME/CFS who, have spent a small fortune (myself included) on 'alternative supplements' and who, like you said, would 'eat rocks' if it cured us - we - would - do - anything!

ME, is a neurological condition, Jan. I believe that it is connected to IBS (which, I suffered from as a child) our gut is vital to our well-being. BUT ... you must do what you feel makes your body function best. If you want hot soup for pities sake HAVE IT! Your mental health is again, a vital piece of the 'puzzle' that is good/poor health.

I will share with you one thing, however, because it saved my sanity: I have suffered throughout with the most appalling, sleep deprivation. The menopause was a walk in the park in comparison! But I have now discovered that one Histamine (non addictive) tab at night, plus or, alone, I take 5drops of CBD oil under my tongue and if - I have a dental treatment or similar, 3 - 5 drops (10% oil) just before a treatment helps enormously with the adrenaline rush and tremors I suffer.

I also found that Sacro cranial massage helped every month or so but this caused me tremendous pain at first. It works on muscle memory and my body was in shock!

It would be lovely if you kept in touch. Let me know how you go on?

Warmest Wishes from W. Yorkshire, England.

Jo

Hi.. Sir ,5 year ago doctor did my EPS to reduce my heart beat. Now from 5 year i have heart sinking problem. I cannot do exercise. When i do rest after walk my heart feel difficultly to become its normal place. Many cardiologist check me and said my heart is ok.

Do i have CFS. I dont know. Doctors said i have anxiety. Many time post here and people became anoyed by me. From last 3 month i am in hospital emergency in after very two days. My life is ruined. My age is 38. Alot of money i have been spend on doctors fees and medicine. Psychologists have been checked me . I took psycho medicine but no improvement. Day by day i m going down. What i do. I m post my post to every body of you. Hope hear good from you. Best wishes for all of you.

Hi Jo, thank you so much for that lovely reply. It has given me huge encouragement. I agree with the hot soup thing too hahaa it feels like soul food so nourishing. Im interested that the antihistamine helps you to sleep . I take nortriptylline for nerve pain and general body irritation/ Jitters, as I was having a hard time with lack of sleep because of this. The nortrip taken at night works really well and I get a full 8 hrs a night now but still get the pains/ discomfort during the day so Im not sure they are really doing anything other than just relaxing me ...I may be better to take a natural sleep enhancer.

I am focused on trying to improve and keep my sanity and sit in the sunshine for at least 20 mins a day ( easier done here in NZ than the UK) I am sure this helps.

thanks again, warmest regards Jan

Hi Jan, Just a quickie - a take a Histamine - not - antihistamine.

Enjoy the wonderful sunshine!

Keep in touch 😉)

Hi.. Sir ,5 year ago doctor did my EPS to reduce my heart beat. Now from 5 year i have heart sinking problem. I cannot do exercise. When i do rest after walk my heart feel difficultly to become its normal place. Many cardiologist check me and said my heart is ok.

Do i have CFS. I dont know. Doctors said i have anxiety. Many time post here and people became anoyed by me. From last 3 month i am in hospital emergency in after very two days. My life is ruined. My age is 38. Alot of money i have been spend on doctors fees and medicine. Psychologists have been checked me . I took psycho medicine but no improvement. Day by day i m going down. What i do. I m post my post to every body of you. Hope hear good from you. Best wishes for all of you.

Dear friend,

Thank You, so very much for expending your precious energy to get in touch! The information is most welcome and I shall indeed look up the YouTube study.

You sound to be very positive, and it's wonderful that you have such a supportive partner and remain active in what you love most. This is priceless.

I was an adult Tutor and Chef in my past life and an avid walker: but now although I can stroll around most days if I'm careful and manage my energy intelligently - I miss being up in the hills and rambling around by lakes and rivers. No matter. I have carved out a pretty decent life and although I live alone, I manage to 'get by' as independently as I can. Little things mean a lot! I feel so grateful and I know this helps me too.

Hey, thanks again ...

Warmest Wishes to You and Yours,

Jo

Thanks for the reply, Jo ...

I was also a professional photographer covering sports and music/entertainment. Since I can't do that anymore, I have lost that personal contact with friends and crew that I worked with through our many gigs that we have worked together over the last 20 years. I am able to stay in touch via Facebook, but that just isn't the same. I also played and coached ice hockey for over 40 years and I miss that as well!

However, my biggest disappointment is not being able to join my wife for a lot of things that make her happy as it is a direct catalyst for most of my ME symptoms. 😦

Hi.. Sir ,5 year ago doctor did my EPS to reduce my heart beat. Now from 5 year i have heart sinking problem. I cannot do exercise. When i do rest after walk my heart feel difficultly to become its normal place. Many cardiologist check me and said my heart is ok.

Do i have CFS. I dont know. Doctors said i have anxiety. Many time post here and people became anoyed by me. From last 3 month i am in hospital emergency in after very two days. My life is ruined. My age is 38. Alot of money i have been spend on doctors fees and medicine. Psychologists have been checked me . I took psycho medicine but no improvement. Day by day i m going down. What i do. I m post my post to every body of you. Hope hear good from you. Best wishes for all of you.

Hi, I have been overwhelmed by the heartfelt comments to my post.

Yes, there is absolutely no compensation or decent alternative for human contact - the contact we want to have with those we respect and share so much with.

But what a fabulous life you've led and in despite everything - still manage.

I know what you mean by FB ... no substitute. I only use it to contact my son, who is still at University.

Is there absolutely no way you could meet up with anyone from those times? It is so difficult - often impossible to tell people of our illness? And when we do, well, 'green heads!' WE LOOK SO WELL don't we? I 'don't even look my age ...?' not sure how that works 😉)

I hold my hands up to 'isolation'. It is simpler, it is easier, it takes no explantion and then I'm not disappointed or hurt. But then how - are - we - to - educate - others. Do we want to? Bla bla. . .

My lovely 'old' Doctor has just retired - Friday. I have a government assessment looming in 2wks (I am 60 but our retirement age has recently been extended to 66 so I rely on benefits - welfare.

I am asked to bring along 'A Doctor's statement', to explain why, I am not fit to work.

I'm not even 'going there.'

I have yet to meet a 'new' Doctor. Then and only then, will I discover what, if anything, they understand about our 'mystery' illness.

Que sera sera.

I aim to become even more - philosophical with age! 😉)

Jo

Hello.

Thanks for getting in touch, and I am pretty much am.

Appreciate the thought.

Thanks 😉)

You're welcome. When you say you pretty much am, what foods is it that you're having that aren't vegan?

Firstly, I do not believe we can isolate food in this way.

Life, is a complex 'jig-saw', yin and yang, mental/physical/ and so on . . .

As I've said to someone else in the 'thread', the West, treats symptoms not the underlying condition. This is folly. We must look at ME in the holistic sense.

To answer then, your qu': I continue to eat Quorn products (contains egg) and the occasional egg too. If I want cake/pasta when I'm out I will eat it. I gave up on the cheese/milk, eat organic where ever I can - I feel this alone is very important ecologically.

The cocktail of poisons our bodies absorb is incredible! And in modern society we have little control about all encompassing - pollutants and their implications.

I use natural fibres to aid my health: carpets, pillows, matresses - all wool. And my shoes are leather. This is against vegan principle.

If we could clean up the environment . . . agriculture, and so on . . . this would help us all feel better.

I have no doubt that ME and other neurological conditions are connected to pollutants. It just hasn't been proven yet - although Cancer . . .

I have no ethical stance re: vegan. I have always refused 'animal tested product' - it makes sense. Medically, this is a difficult one to argue.

I have always done what ever I could. If one has an underlying condition (as I did have 50yrs ago) IBS or other, then one must surely look at diet. I did this and my IBS was virtually gone.

That aside, restrictive diets would not - in my humble opinion do anything to 'cure' ME - although they undoubtedly, would cure or, greatly make better, other issues.

Jo

Hi Jo,

Ah, I see, so you're a vegetarian. There are lots of points in your response, so I'll try and respond to all them.

1. I didn't become a vegan for health, I did it for the animals. Having said that, I've also had CFS for 11 years so far, so if someone had told me that going vegan would help even just a little with CFS, then I'd have done it just for that.

   1.1) The digestion system of a human is where all of the food/drink (fuel) is digested and created. This is a very important part of the body, so removing foods that aren't supposed to be in there in the first place or that your body is intolerant to is treating the condition/issue at the source in most cases.

2. 'The cocktail of poisons our bodies absorb is incredible!' It sure is, which is why being a vegan is also really important for people who are more susceptible to digestive issues or the negative effects of food.

   4.1) Having a vegan diet isn't a restrictive diet, it's just not eating foods we can do without: it has never been natural for humans to drink the milk of another species at birth, let alone into adulthood. Also, protein can now be produced in a way that doesn't require the slaughter of any animals and the proteins that are made in this way can be produced costing less and have a lot less of an environmental impact to the world.

3. Pollution could be related, but I think all the chemicals and supplements that are injected into cows, pigs, chickens etc. are a lot worse.
4. I also had IBS for years and since becoming a vegan, that has almost completely gone as well.
5. If you're talking about cleaning up the environment/making it better, becoming a vegan is the easiest way to improve the environment as vegan food takes a fraction of the amount dairy/meat farming takes up land-wise and agriculture is the largest contributor for deforestation in the world.
6. Going vegan may not cure my CFS, but it has certainly improved my symptoms, so for that reason alone, I'd recommend it to anyone with CFS who wants to make the effort to improve their symptoms. (I say make an effort because through my experiences on here so far, people seem to want to make their symptoms better, but seem to think eating vegan is really hard and want to fix their issues without making that amount of effort.)

hi there just out of interest do you exclude gluten and refined sugar ? I try to avoid these as it seems I have read so many times that they are linked with increased inflammation. I am interested in becoming a vegan for my health too . be interested to hear your thoughts .

Hi jan96753,

I've felt a lot better since significantly reducing the amount of bread I eat. In other words, I used to eat bread almost every other day, but felt rather bloated on it. Since then I've tried just eating 1-2 loaves of bread a month (shared between me and my wife) and eating some stuff like breaded burgers has completely removed the bloating.

Regarding refined sugar, I haven't found that it affects me much, but I enjoy cooking (as does my wife), so other than cooking some breaded burgers and the like (that would probably contain the refined sugar), we cook most of our meals from scratch, so I can only assume that we have a fair amount less refined sugar than most people do (hopefully that makes sense). Everyone is different, so it could be worth you looking at the refined sugar content of what you eat and totalling up an average week's worth to see how that compares to guidelines.

I'm not trying to be condescending with this next comment, but I've researched food a lot over the years for various health issues I've had regarding digestion and then onto making sure I have a balanced nutrient rich vegan diet, so I'd be more than happy to chat to you about it if you wanted to.

Hello, again.

We're very much on the same page although I'm disappointed that you believe pollutants 'could' be related when they so obviously - are.

A land mark ruling only 2 days ago re: the beautiful 9yr old girl in E. London who died (was killed) due to the air pollution on the road were she lived - she was asthmatic. This is massive.

Still, you are obviously well informed and I respect your views. More importantly, you have found what works best for YOU. I have enjoyed 'chewing the cud' - thanks! 😉)

In contrast, the NHS and it's 'One size fits All' approach doesn't bear at all well for ME sufferers. It simply does not understand the illness. The research is not there. It seemingly, does not have the resource to act. . .

I was however, struck with how you ended your piece, and would just add (for 'those on here' - looking for 'a quick fix') a note of caution:

As with most things, knowledge is power. And educating ones self is key. You are absolutely right - so many people - want a 'quick fix'. They do not seem to 'make an effort' to empower themselves to alleviate their symptoms. . . pills seem to be a much quicker, easier option.

But 'quick fixes' are not sustainable.

I go back to the above - knowledge is power! Education is KEY. And unfortunately, I have seen too many young people (I taught in FE/HE) who, on the wave of Veganuary . . . have become vegan over night without first educating themselves: instead of putting alternatives in place, they have simply, cut food groups - restricting their nutrition.

So whether this is political or personal (can we ever separate the two, when the personal is inevitably, political), this is not helpful and can be dangerous - particularly for young women, who are still developing.

So while I would very much like to see our population move toward a 'plant based' diet (I think this term makes it simpler for many to understand, given the 'mythology' surrounding veganism in some qtrs) and I wholeheartedly agree with you NO cure for ME but YES, improvements to health and symptoms through diet.

I would just like people to take some quality time - because they are worth it: research, research, research - reliably and responsibly.

Not fashionable/kardishian info' from the internet or worse, a 'Womans'' magazine but solid research from a reputable source.

I think we can absolutely agree that, a 'plant based' (natural) diet will have less pollutants, less chemicals and therefore, it is obvious, will place less stress on our body.

Enjoy! 😉)

Hi Jo,

That is true, but not everyone lives in London. In context, yes it's a problem in London, but in comparison to London, most other places are far much better for pollution levels.

It does work well for me, but it would/could work well for others if they'd actually give veganism a try for longer than a month and eat new foods, a) because there's so much vegan food out there which is super tasty and b) because if you only increased the amount of vegetables you ate and didn't increase the variety you ate, then of course, you probably would get deficient in certain vitamins/nutrients.

I agree with your words on quick fixes. Veganism is not a quick fix, but the change in symptoms are noticeable after a couple of months because it is so much better for your body that eating meat and dairy. I think Veganuary is great! The primary website that promotes it has loads of information on getting enough vitamins and nutrients, so going vegan overnight no longer becomes an issue.

We can, I'm not a vegan for any political reason, I'm a vegan because I don't want any animals to suffer. That's it. All you have to do is view a documentary like dominion of what the health or look at some of the expose videos of the meat/dairy industry to see how much suffering there is.