12th May - CFS/ME Awareness Day

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I was reading a thread yesterday on another forum and I followed a link, which led to another, which led to another ... and I accidentally came across the news that today is CFS Awareness Day!

It had never occurred to me that such a thing existed, and I did have a little chuckle to myself at the irony of the idea! For anyone with CFS, every day is one on which you are aware of it!

Anyway, I know there are quite a few posters on FH&G who suffer from it, so, even though I don't often engage here, I thought I would spread the word in case, like me till yesterday, you were completely oblivious to the "importance" of the date! I guess it is an indication of how far we have come in getting the illness recognised, and though there is lots more to do, that is something to celebrate.

[ilove2patch]

What is CFS? I know what ME is. Is it the same thing?

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Yep, same thing. Stands for Chronic Fatigue Syndrome. Some people prefer to call it ME, some CFS. Am in the latter group myself.

[cookiecookuk]

i never realised there was an awarness day for ME .but as you said i am aware of it every day.and for those who do not suffer its full title is post viral chronic fatigue syndrome OR Myalgic Encephalopathy

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Not all CFS develops after a virus though, so the post viral tag is a bit of a misnomer in some cases.

[saasher2012]

Please pardon the ignorance but could you explain a little more about this condition?.

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Certainly! 🙂

It is a long term neurological disorder, more common in women than men and often, though not always, starting quite suddenly after a viral infection. The most likely age of onset is between 30 and 59, though it can affect children and teens. Symptoms vary, but all sufferers have fatigue that is not relieved by sleep and an inability to tolerate alcohol. Other very common symptoms include pain, inflammation, digestive problems and nausea, sleep disturbance, flu-like feelings and sore throat, sensitivity to light and sound, random ear and tooth ache, an inability to maintain a normal body temperature, and sensitivity to medications and food supplements.

Symptoms can last for yrs (often decades), but do wax and wan unpredictably. There is no cure and sufferers have to adapt their lives, doing much less than formerly. The most severely affected can be bedridden. It feels much like having jet lag and flu simultaneously.

The cause is unknown, but it is likely that disruption to the way thyroid hormones and cortisol work in the body are responsible for some of the problems in some sufferers.

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Forgot to mention, most sufferers are made worse by exercise.

[saasher2012]

Hmmm! Thank you for that., tell me is there any ongoing research into this condition & if so are any new ideas forthcoming?
Correct me if I'm on the wrong track but if it is viral born do you think that nerve endings are involved & the brain?
Sorry about the ? But I am genuinely interested & I believe if more people are made aware of the suffering this causes the more likely they are to help further research.

[cookiecookuk]

hi saasher i was diagnosed about 6 years ago but had it about 2 years longer than that but it took that long to diagnose as i have several other health problems as well i feel like i have run a marathon with flu and no sleep all day every day.but you learn to cope.i spent a lot of time with an occupational therapist when i was first diagnosed and learnt a lot from them.some days i struggle to put one foot in front of the other.one of the worst side affects for me is cramp.i get it in my shoulders chest arms stomache legs feet toes fingers ect and it is very painful.i know take medication for it and it has help a bit but if i have a bad day so does the cramp.

i was reading earlier a bit on the net which i have copied and pasted below.so there is a minor light on the horizon..

The Autoimmunity Research Foundation is a 501(c)3 charity whose educational efforts are focused on helping Health Professionals, and the public, understand the cause of Th1 chronic inflammatory disease.  Many chronic and autoimmune conditions, including Fibromyalgia (FM), Rheumatoid Arthritis (RA), Multiple Sclerosis (MS), Chronic Fatigue Syndrome (CFS/ME), Post Treatment Lyme Disease Syndrome (PTLDS), Sarcoidosis, Depression, and Bipolar Disorder, are now succumbing to therapies based on our molecular description of inflammatory disease biology.

there is quiet a big article on it.just type in cfs.

hope this has given you a bit more info.

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There is some ongoing research, but the problem is there is unlikely to be any money made by finding a "cure" as a one-drug-fits-all solution is improbable. Hormone activity and interaction is just so complicated. So, for example, sufferers usually produce enough of the thyroid hormones, but the body may not use the supply efficiently. That is hard to correct. Just adding more doesn't help. Sufferers often have cortisol peaks and troughs at different times of the 24hr circle than well people do. But adding more cortisol is problematic (creating other problems) and doesn't solve the underlying body clock issue. Sleep problems are also hard to address, as so little is known about why we need it and how to manipulate it safely. Also, people with CFS may get enough sleep. It is just it is in fractured segments and is unrefreshing.

The brain is definitely affected and many people have brain fog as a major symptom. Though why is not clear.

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(((Cookie))). You snuck in there whilst I was typing.

Sorry to hear you are having such problems with cramping.

I, too, had delays getting a diagnosis. My worst symptom initially was nausea. Had it almost solidly for the first seven yrs, though it is more intermittent now, and sleep disruption has been my biggest issue for about the last 18 yrs. (Have been unwell with it for a tickle under 25yrs.)

[saasher2012]

Thank you both for being so upfront & giving the information, I will take a look on the site & read up about it this evening.
It sounds a very debilitating illness & as I said before the more people know about it the better!
I wish you both a speedy conclusion to your health problems in the future, Sandra.

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Thank you, Sandra!

[cookiecookuk]

the other thing i have noticed through talking to others is IMHO that a lot of what we suffer is very dependant of what type of people we are as you get very active people with a lot of get up and go and then people whos get up and go has gone.and for the lack of a better word have a lazy disposition.i think this second group probably suffer more because they let ME rule them oppose to the first group who rule the ME .not that it is there fault as peoples disposition is determined from birth.but i think they are less likely fo try and fight it.

i hope that does none sound horrible as i was not trying to be..

[saasher2012]

No you are not being horrible & there is a lot of sense in what you say, especially the way you approach the illness but like everything else we are not made the same, some suffer in silence others don't but that's humans for you. I have followed your posts about work & now I understand some of what you are going through I do hope that you get it resolved to your satisfaction I would hate to think I had caused that misery to any of my colleagues , they should be ashamed of themselves!.

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I see what you are saying ... but I think some people just run out of "fight". Feeling ill day after week after month after year after decade just grinds you down. I cope now by having no hope. Partly because my diagnosis took years, I fought too hard to carry on through that first decade. I searched out alternative help, as the medical profession had nothing to offer, and had over 150 sessions of acupuncture, energy healing, homeopathy, hypnosis, kinesiology, and gawd knows what else. Ten yrs ago, I decided enough was enough. The false hope was killing me.

So now I live within my energy allowance. I can manage provided I pace myself very precisely. Of course, I would love to be able to do more, but the reality is I can't. So, my CFS does rule what I do, but that's not because I'm lazy.

[saasher2012]

I don't think that's what C C is saying , you clearly are a fighter but some give in on diagnosis, perhaps lazy was the wrong choice of words you have learnt to live within your capabilities because you have too but you still have the spirit to dislike it. Until such time as something can be done I'm afraid that's all we can do in the circumstances. Not a lot of consolation I know!. But I think even the fact you are prepared to educate people on this awful illness shows you still have the fighting spirit that you think you've lost.
Long may it continue!. Sandra.x

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I haven't lost my "spirit" as such, just the willingness to bash my head against a brick wall constantly. For example, I need a couple of things from Sainsbury's. It's within walking distance and the exercise is good for my restless legs. My preference would be to go now, while it is quite quiet, but I am much stronger after lunch. So, I could say to myself "I'm not gonna let CFS dictate when I do things" and set off. The result would be feeling ghastly for the rest of the day and not getting anything else done. So, instead I will potter down later ... and not have to "pay" for my activity.

[saasher2012]

Yes & that's the key knowing& listening to your body but still very frustrating I'm sure!.