M.E Awareness week

 There is always lots in the media about cancer and various other conditions, but some like M.E/CFS, get little press in comparision

This week is ME awareness week and today is International Me awareness day, as yet I haven't seen or heard anything about it anywhere

As a 'sufferer' myself and thought I would mention it here

Today is also International nurse's day. It's on this day because it is the birthday of Florence Nightingale

Hi Jan, sorry to have to ask but, what is ME? I could google it but I'd imagine there are others who don't know what it is aswell

I know what you mean about not being aware as my friend unfortunatley had MND (motor neuron disease) and we didn't know exactly what it was until I searched online about it, then I was  horrified Thankfully (in a nice way) he only suffered for about 18 months then passed away in his sleep. I'm really glad it didn't get to the stage of "brain function only" as that would have been even worse to see He was always on the go and nothing stopped or bothered him and we're guessing he burnt his body out and it gave up No one knows what causes it so they don't even know where to look to try and find a cure even though they are trying Lack of funds doesn't help

There will be many illness out there not known about by the general public and in the media spotlight as Cancer, MS etc is.

Richy:

Hi Jan, sorry to have to ask but, what is ME? I could google it but I'd imagine there are others who don't know what it is aswell

Explanation

 sounds similar to SAD which is known to improve with the special lamps

 Not really like sad Nick. Is much more involved Sad tends to be seasonal. ME/ CFS(chronic fatigue syndrome) is constant all year round.I have had it for about 12 years now

I was going to link to some info, but it just shows how many people have never even heard of it Which proves the point that it doesn't get enough press.

Now if I sad 'yuppie flu' the awful and misinformed name it has been referred by in the past, it may ring more bells

Gulf war syndrome is similar.

Quite a few well known people have had it or still have it.

Florence Nightingale,David Putnam , Kelly Holmes, Claire Francis, Ian Woosnam (golfer), Duchess of Kent,and many more

 Hi well said Jan.

As you say every one knows about cancer{my mate had lung cancer but ok now although docs cannot give him the all clear}.

We worked at a chaps house who had Parkinsons disease,so sad to see some one who is obviously very clever,but being reduced to some one who knows nothing or remembers anything! He repeated the same conversation all day,and when he hadn't seen you for five minutes,he thought you was a burglar! But the scary thing was every now and again he seemed normal,then the time loop started again

As you say no media attention or awarness?

 what is the difference with M.E and M.S???

soulassassin76:

 what is the difference with M.E and M.S???

 

M.S. as in Multiple Sclerosis?

 I think ms is a disease that affects the muscles and its progressive as the muscles deteriate,   di

 Although people with MS have some of the same or simliar symptoms, it is a very different condition.

As DI says it is progressive and deteriorating, but affects the central nervous systems. It attacks the myelin sheath which is the protective layer around nerve fibres. The damage caused affects how messages are carried to and from the brain to other parts of the body.

Muscular spasms oocur due to the damaged nerves function.

 It varies in severity as in that some people can be well and have hardly any symptoms for years and lead a almost normal life.But others can deteriorate extremely quickly and be totally dependent on carers in a relatively short space of time. It also has remissions and relapses which can vary in sererity too.

 Meant to say that MS shows on an MRI scan as lesions in the brain. The lesions are damaged areas.

I had an MRI at one stage as it was thought I may have MS. Thankfully it was clear.

ME or chronic fatigue syndrome as it is more common called these days, also has varying degrees. Some think the two names are infact different conditions. But overall the medical profession call it the later name. Within the medical profession though, some doctors etc still refuse to believe CFS is a real condition and is all in the mind. This makes it extremely a hard road for people with the condition as it is very real I can assure you

A percentage have mild or very mild symptoms and can lead a near normal life and hold down a job. Some like myself, are more affected, cannot work , are moderately to severely debilitated and are virtually housebound. 25% are very severely affected and are not just housebound but also bed bound, with some not even able to feed themselves.

Some people get better after a short time , some after a longer time, and some never get better.

There is no known cure, only a myriad of suggested management to help reduce and ease some fo the symptoms. A huge variety of things to try are from eating dark chocolate every day to extreme programmes of graded excercise and cognitive behavious therapy. Not all things work for all people indeed some end up much worse.

The latest news is that ME/CFS may be a genetic disorder and researchers have divided people affected into seven types according to severity of symptoms. Because of this, a diagnostic blood test my soon be developed. At present there is no real diagnostic test. Leading on from this. it is also suggested that there may be possible treatments developed such as injections to help regulate the way the immune system works

Thanks for reading

lilac_froggy:

have divided people affected into seven types according to severity of symptoms. Because of this, a diagnostic blood test my soon be developed. At present there is no real diagnostic test. Leading on from this. it is also suggested that there may be possible treatments developed such as injections to help regulate the way the immune system works

 All the more reason to raise awareness as this may lead to increased funding to develop these treatments, is there a charitable organisation equivalent to Macmillans, Christies or CancerUk etc (see theres loads of 'em for cancer!)?

 sorry to hear about your ME i have a friend who has it and always seems better in the summer months.

Wow that must be terrible for you, I hope they get a cure soon. Doesn't that famous female sailor have it too? I seem to remember listening to something on the radio years ago.

Hugs for you.

 That would be Claire Francis mungo (is your name Dawn, my memory isn't great. That's the cfs/me!)

Dave, I belong to Action for ME/CFS http://www.afme.org.uk/

and there is also the ME Association http://www.meassociation.org.uk/

These are the two main official ones

I hope your friend is feeling as good as possible David. It doesn't make any difference what time of the year it is to me.