Myalgic Encephalomyelitis

For issues specific to caring for someone with mental ill health.
Myalgic Encephalomyelitis commonly known as M.E / C.F.S (Chronic Fatigue Syndrome). This must be one of the cruellest illnesses out there, whether for the patient or the carers. I know many will say that there are many other diseases and illnesses which are far worse and I agree: this is true. However for anyone who has ever experienced M.E. they will know that the reason I say it is one of the cruellest illnesses is that the symptoms vary considerably, without warning and you are constantly waiting for the next "kick in the teeth"

My wife, who is now 48, was struck down at Xmas in 2007. It all started with a very bad flu bout, which at that time was doing the rounds in the South. We both had it. I recovered by New Year but Vhon is still suffering to this day. She has had a continuous headache since 22nd Dec 2007. This ranges in strength from 5/10 to 10/10! For the uninitiated; imagine having a bad nagging toothache for 8 years continuously!!! When I find the appropriate spot on this forum I will attempt to write our story in full. Suffice to say at this stage I often think that it would be easier to be the patient than the carer for this illness. At least as the patient you can resort to morphine etc and have a few hours oblivion. As the carer there is no such relief. I am on tenterhooks 24/7 awaiting the next attack or change in her symptoms. In the meantime I would sincerely welcome contact with anyone who has had or is having experience of M.E./ C.F.S.

This may sound controversial but most other diseases, illnesses, disabilities have a somewhat defined course and it is more or less known what will come next! Not so with M.E.. We don't know what will come next. In fact I have no idea what will happen in the next couple of minutes.I have seen her walk across the room to switch on a light and suddenly collapse in screaming agony and having to resort to being bedridden for the next 5 days in so much pain that I have to keep her more or less comatose with a cocktail of drugs. It is like watching someone literally being smashed across the head with a hammer.

To understand this it is perhaps useful to try and understand the origins of M.E. which many knew in the old days as Yuppy Flu. To this day many still do not believe it is a real illness because there is rarely any firm diagnosis pattern. However a Neuro-Psychiatrist explained it to us like this:

Imagine that your brain is split into two halves, which we shall call A & B. At some stage in your life you are unfortunate enough to experience some kind of trauma. This horrific episode is something your brain does not want to deal with and so it "files" the trauma away in the depths of side A. If at some stage further down the line you are beset by another trauma which your brain can't cope with then it will attempt to file it away in the depths of side B. And so now you carry on with your life with these two traumas safely tucked away from your memory where they can do no harm to your mental state by allowing you to dwell on them.

One day your brain (remember the two halves) has to tackle your body being attacked by some kind of virus.This could be many years later and in our case was the flu virus. BANG! this is where the trouble starts. Your brain now becomes overloaded with emotions and a mini whirl wind starts within. During this whirlwind the previously hidden traumas are dredged up and now your brain simply goes into overload. There is a continuous maelstrom within which actually starts to do damage by stopping signals from your nerves reaching the correct switches within the brain. In short everything is jumbled up to such an extent that your brain simply can't cope with what's going on. It starts attaching the wrong signals to the wrong switches causing havoc in your body.

And that my friends, simply put is where M.E. starts. It is a virus of the nerve endings which are sending signals to the wrong place. The resulting chaos within the brain leads it to impose a range of symptoms which are so diverse that I doubt that there is any definitive list of the possibilities ever written. Suffice to say at this stage that in the first 2 years we visited just about EVERY department in 3 different hospitals, countless specialists and consultants, had MRI's, CT Scans, 100's of blood tests, 2 operations, wired up to just about every type of machine imaginable only to be told that she had M.E. / C.F.S. for which there is no cure. It is something your body has to endure and deal with until such time as the brain snaps out of it. YES: you can eventually go into remission and in lots of cases people have gone on to lead more or less normal lives once again. The challenge is that although there is this glimmer of light at the end of the tunnel, it is very faint and it is totally unknown just when it will be reached. Some suffer for months, some a few years, us 8 years so far, some for 20 years and a few even for life!! It is not a killer except for the few who have had enough and go on to suicide. Yes we have experienced those thoughts as well. It is our 12 year old daughter who has stopped my wife doing anything in that direction, although we have had occasions where she has begged me to give her an overdose and put her out of her 24/7 pain (more often agony) Imagine being begged to assist the one you love kill herself....................
All sounds fiendish....

Sorry if this is akin to grandmothers and eggs, but do you search on the US specialists sites for this hideous condition? I suggest it because when my husband was diagnosed with cancer I found that the US patient/carer forums had a great deal of information not readily available over here, simply because their population is so much larger than ours, so has more experience accumulated. Also, of course, their health care is differently funded, which means that those with money can access treatments the NHS may not be telling you about etc etc. Or research etc being carried out over there.

Don't assume that docs all know what is going on all around the world, as I know from Cancerworld it isn't seamlessly transmitted. You may find things out that the UK docs haven't come across yet.....

All the best possible in such a horrible situation for your wife, you and your family.
Hi Jenny
Thanks for your suggestion. Vhon has recently spent 6 weeks on a neuro-psychiatry ward being assessed by one of this countries leading consultants on her problems. Whilst there is no cure for this random virus, which affects everyone differently, she is gradually being introduced to Cognitive Behaviour Therapy which is designed to help the patient live with the symptoms and cope with their effects. It is a slow process but I am beginning to very gradually wean her off some of her meds on a daily basis. She still needs a top up some of the time but any reduction is a positive step.

Interestingly reference your suggestion a former Vice President of the US had M.E and even with his clout little was achieved towards finding definitive answers.The biggest challenge is finding the trigger for the virus for the individual concerned. No two are the same or so it appears which is understandable when you understand the description as given by our neuro-psychiatrist.
Hi Tony
Sorry to hear how much your wife has been suffering. I am not sure if this is any help or not but I will post it just in case- a link to a book I bought. ... e+syndrome
I am not sure if this touches on your wife's condition but it does cover Cronic Fatigue Syndrome and is quite extensive and looks at lots of different angles to help relieve symptoms.
I bought it myself when I was feeling fatigued post hyster and although your wife might not want to follow every last detail it may provide some fresh insight not yet encountered with your many professionals. It seemed quite a good book.
Thanks Henrietta

I will certainly have a look. Nothing ventured, nothing gained.
I have ME its awful