CFS and ME

[Jax]

Having been loosely diagnosed with CFS I thought I'd start a thread here and ask people of their experiences and what natural therapy has or hasn't worked for them. From what I understand CFS and ME (Myo- Encephalitis) are one and the same, and are certainly depicted that way on the ME Research site (http://www.meresearch.org.uk/information/whatisme.html). I'm assuming either way, whichever you call it, it can develop at varying degrees in a body, and so everybody's experience will be different but there might be something that has provided a good bit of relief for many.

ME Research (http://www.meresearch.org.uk/)

ME Action UK (http://www.meactionuk.org.uk/)


Looking back in an old copy of Healthy (July) it says that a Canadian study says probiotic supplements could ease anxiety in Chronic Fatigue sufferers which is one of the many symptoms of CFS.

[karen @rawchocolateheaven]

Hi Jax
When did that happen? What effect does CFS have on your life? I understand if they are one & the same (ME) it can be quite severe! are there lots of stages?

[Jax]

LOL well that's why I said loosely diagnosed, it was back in June when I saw a neurologist for the brain injury, he diagnosed, CFS, chronic stress and chronic pain.

I would say that for me I just generally feel wiped out throughout the day regardless of how much sleep I have, I never feel bursts of energy. Which is why I think I don't feel the buzz that others do on raw food http://www.rawinuk.com/images/icons/icon11.gif I also have some probs with sleeping with my head buzzing all night, so get really annoyed if somebody wakes me up for no great reason. I think it's the tablets that I'm on that make me not 'come round' until about 10.30am and not CFS, but I may be wrong on that one. But I would say generally I feel like I'm watching everybody else living life, but again maybe that's the tablets.

I'm not sure about stages per se, perhaps varying degrees?

[Ruth]

They are not one and the same. A lot of harm has been done by the naive assumption that they are the same condition, even through ME sites. Both the names have been used as an umbrella term for years, and both have varying degrees of illness ranging from being tired all the time with aches and pains to unbeliveably severe illness where the sufferer is in agonising pain, bed-bound, vegetative and unable to communicate. People die of ME, including children, and the world as yet is unwilling to face this...

ME is short for myalgic encephalitis which is loosely described as inflamation of the lining of the brain, but that is only a start. There is much more going on including inflammation of the spinal cord; reduced blood flow into the brain; a severely heightened state of auto-immunity which causes the body to turn in and attack itself; huge glandular response; loss of vision, loss of normal hearing, mental processing, memory; loss of motor function, and knowledge of how to move or speak; inability to process any sensory information at all including light, air, sound, touch; clawing of hands and feet; yellowing and purpling of the limbs; total loss of all control of bodily systems; inability to think without immense pain; inability to communicate; and of course total exhaustion, which is not the tiredness you think of, but more like the exhaustion you would feel whilst dying. The World Health organisation classify ME as a serious neurological disorder. The symtoms are unbelievable, and unless you have had the illness or have a family member who is going through it you will not be able to imagine what life is like with ME. People with severe ME pray that they will develop cancer so that they can get some pain relief and a date for it to end.

Any person who has recovered from severe ME is very lucky indeed and knows it. You will not hear about sufferers in the national press because there would be an outcry that so little is being done to raise awareness with so little money put forward to research. You will also not hear about them because if they do recover, they and their families cannot talk about it. It is easier to talk about chronic fatigue because most people can imagine what is might be like to be tired all the time, particarly post-virus or traumatic event; and I feel there will be more diagnosis of this in the future as our lives more further away from a peaceful, nature-led, vegetable-full exsistance. CFS needs very careful monitoring because it can develop if not handled correctly.

If anyone has been diagnosed with chronic fatigue I would recommend taking responsability for one's one health in as many ways as possible, particularly nutrition (green smoothies) and resting as a priority.

If anyone is interested to read about the effects of ME I recommend my friend Sophia's website sophiaandme.org.uk ...her sister's (also my friend) Roisin's amazing book about Sophia to be found on the site....and a book called, Lost Voices,' from the investinme.org website

[Kirsteen]

Thank you for posting that, Ruth. Yes, CFS and ME are not the same, though in this country the authorities have tried to 'downgrade' ME by calling it chronic fatigue and, as a result, all a doctor can prescribe is exercise (which makes most ME sufferers much worse) or CBT to convince you you're not really ill. It's ironic that in this country all research funds for ME go to the psychiatrists as though it was all in our head, yet we're not allowed to donate blood or organs as they're not considerd 'safe'.

I've read Sophie's mother's story and her copies of all the official documents and they make horrific reading. There's a short youtube clip at http://www.youtube.com/watch?v=AUPkja02uR4 which tells of others who are bedbound with it.

Fortunately, I'm not that bad but it's still been pretty devastating. I was struck down with it over 3 years ago and haven't been able to work since. On a really good day, I can make it out to the local shops but this is often followed by 2 or 3 days in bed with crippling pains and an inability to do anything, feeling like I've got the flu. At the beginning I couldn't read or watch television or even take part in a phone call. If I'm rested I can manage those things in moderation now.

No one really understands just how exhausting the simplest thing can be. Today, I sat propped up and chopped some fruit and veg, I then stood to juice them. That was at 1pm. It was 4 pm before I had the energy to drink the juice. Before I was ill, I was extremely active, a real gym rat and spent my holidays hiking. I was also 13 stone. Today I'm 7 & 1/2st. I just don't have the energy to digest food - one of the main reasons I'm so interested in a raw diet.

I've seen several specialists at the hospital for things associated with the ME such as the digestive issues, the vertigo, breathlessness etc but no one deals with the ME itself. I've also tried all sorts of supplements, seen a wholistic nutrionist etc. The only thing that helps is really careful pacing. If I try to push beyond my limits, even standing a couple of minutes too long, I'll literally collapse, my heart pounds, and I lose all vision and control. My son's quiet used to dragging me through and heaving me on the bed.

There's some research now linking it with a retrovirus XMRV (the third to be discovered I believe). However, I firmly believe that if I'm going to improve it will be through nutrition not medicine (I'm not a big believer in drugs) And yes I simply love green smothies and juices. I've read some Victoria Butenko and I'm currently on Anne Wigmore and the Hippocrates diet.

[sharonjones]

can i ask you please Jax, what were your pH levels at the time of that diagnosis? and what would your pH levels be now if you are seeing some improvement?

[Jax]

See that's what I thought from our conversations Ruth, there's no way that I've sufferred any where near what you have been through (sorry, I didn't want to highlight your case until you'd posted yourself ;) ).

But whenever I've read about the 2 and researched them, they are always presented together :noidea: Are we okay to continue the thread including the two as seperate but together for the purposes of useful discussion in this thread, especially if ME can develop from CFS? I really hope it can help some people to make the connection as you say Kirsteen, to raw nutrition, as Ruth (and I think I'm right in saying this) has made the best progress in her debilitating experience through raw food.

Sharon - I have only just started looking at pH levels, in fact only just got my grubby mitts on some stix at the end of September, the neurologist saw me at the end of May, and was the first to sign me off work and put CFS, chronic pain and stress on my first sick note. He asked for a Thyroid test at the time, which over the years I've always thought that an underactive thyroid might be at the heart of many of my problems (Suzi Grant diagnosed Candida which seems to fit better), but yet again it was negative.

The only improvement I would say that I see now, is that I'm not at work and trying to literally drag myself through the day, so I can cope with a whole day at home, but add in the many trips to doctors, physios, pain clinics etc that I get then I can get worn out pretty quick despite waking up about 10.30-11am having gone to be about 10.30pm.

Again I don't see much of this ability to zing out of bed fairly early in the morning that many raw fooders do http://www.rawinuk.com/images/icons/icon9.gif But then I'm a complex case at the mo :rolleyes2:

[Ruth]

Jax, I think it's OK to keep the thread as CFS and ME because they are connected at present in people's minds, and as you say ME can develop out of CFS if it is not handled correctly.

Kirsteen I do feel for you. And yes, unless you have experienced the particular type of ME exhaustion which is not 'tiredness' you will not understand what it's like to live with it. I have never expected anyone to understand how I have lived my life or what it's like to rehabilitate from it. We can only show our joy in the little things we can do that mean so much to us which others have forgotten mean a lot to them!

The message of joy over the simplest things in life is something that we can show to the world; that's the way round I choose to see the quest for understanding. For after all everyone has their own pain-story that means a lot to them; ME is just more dramatic; more of a case study. We have a gift to give in that respect. We can remind people of their joy, health and vitality through our own understanding of how to create it, live it, breathe it and feel it.

I also have been following the research into the retro-virus XMRV and have even contacted the clinic in Arizona about it. My friend, Criona, Sophia's Mum, expected this research a long while ago; and the doctor who treated me came from a background of treating AIDS and retro-viruses and knew the link to severe ME but could not get past the psychiatrists who garner most of the research funds; crazy world!! Like you I am not sure if there would be any benefits to be tested positive for XMRV. Well apart from the huge psychological comfort of being proved to have something recognised.

I echo your feelings about drugs; they are not the way to go with this illness. They are false crutches and do more harm in the body than good, often taking years to leave in massive detox symptons further down the line. I also do not understand why doctors continue to encourage us to mask symtoms rather than get to the underlying cause!! It's like Poirot deciding to cover over a really valuable clue on his way to solving a case! What's the point of that?! If you're determined to be well why cover up the extremely valuable evidence?

There are other ways of treating the body; ways it will understand and do well with. And they are all natural and loving, not based on fear and dread. Wise, ancient truths much longed for. I have met so many people with varying degrees of this illness and they are all seekers after the light. ME is positive for it propels you to seek and find.

I believe that nutrition is the second most important tool to use when deciding to be positive about this condition; the first being rest (internal also) and ability to stop before one gets over-done (easier said than done in almost every case, but must needs try to do it!)

To me the green smoothie/pudding/blended soup is the all time BEST recovery and detoxifying food for those with CFS and ME. It gives the digestive system a break; it gives the brain a break; it gives the immune system a break from reacting to all different kinds of foods; it detoxes and stabilised the kidneys; it gives enormous bio-available nutrition where often the body finds it hard to assimilate normal un-blended food; regulates hormonal balance and adrenaline levels; helps with temperature control particularly when you suffer from excess cold; keeps weight up (or looses it if you need it that way round...best weight loss tool EVER!) regulates blood sugar..really important with this condition; helps sleep; builds muscle with no exercise (try it and see) and helps with night time stress...You name it I think the green smoothie/soup/pudding is the food of choice for anyone diagnosed with any form of these conditions. Green juice is good but too fast-acting for sensitive, extremely reactive bodies. Green juices can exacerbate symptoms if not used very carefully. The fibre in these blended green foods slows this reaction down and builds you up gradually. They are also the best ever transition tool into raw foods. After a few days of drinking you begin to crave raw, and nothing but what will bring you that particularly great if subtle reaction. They show you how inferior a reaction other foods/drinks give you in comparism.

It has been 5 years now since I was in a vegetative state. I was given an anti-oxidant protocol from South Africa during the last 3 years full-time in bed which consisted of pure anti-oxidants on a massive scale. To me, the raw food diet with mainly blended fruits, greens and small amount of oil replicates that protocol whichsaved my life; and going raw was just the next natural tool that made perfect sense.


Good luck to you both. And may your apparent condition now be the catalsyt for energy, joy, and unlimited love for all life...now, and in the future. May it be the best thing that ever happened to you. Make it the best thing! There's no other choice.