Anyone have any experience with M.E.? (long, sorry)

[littlelamb]

My brother, who is 25, was diagnosed with M.E. just over two years ago. He thinks that being hooked on seroxat and also smoking too much weed when he was younger were definate contributors to his condition. At his worst, it was clear that he had huge problems, but I'm not sure how much this was due to his being depressed and his continued smoking My only real knowledge of M.E. is that it is notoriously hard to diagnose, and, sadly, I am increasingly suspecting that he has recovered, but has got used to his lifestyle. He openly admits that he's better off on benefits, and can happily walk around for a whole day with no problem at all, when a year ago he was in a wheelchair, so I don't really see why he doesn't get a job. His girlfriend is due in a couple of weeks and I am really worried about the effect this baby will have on them both. She is only 17 and is incredibly naive, telling me she never intends to get a job, and he still has two naps every day. I suppose I'd like to know how likely it is that he is in fact still ill? I know that sounds harsh, but with no way to diagnose him, there is no way to report him as a benefit cheat (I know how bad it sounds to say this about my own brother, but they both frustrate me so much. I am struggling to get my degree while they do absolutely nothing all day and have money to throw around). I just feel it would benefit both of them to have some sort of career and direction. He is not stupid by any means. I don't mean to belittle M.E. sufferers at all, I have seen what it can do to people. I'd just like to know at what point you knew you were better, and how long a recovery took.
Thanks x

i think it varies from person to person how long the recovery is.

littlelamb I know exactely what you mean. My other MIL has ME, she can make it out the house to go to a funeral but says that she is too tiered to make it out the house to our wedding. I find it difficult to get my head round but have looked into it. My aunt also has Me.
Here's my undestanding of it.
Symptoms vary very much from person to person. It has a physical side which usually starts off as post viral fatigue. These symptoms are diagnosiable and very real.

ME has a psychological aspect, and although not every dr recognises ME, of the ones that do they belive that 95% of sufferes have underlying mental health issues.

This does not make the physiologiccal symptoms any less real or physical to the sufferer. IMO If the brain is powerful enough to make your heart beat it is also powerful enough to make mental health problems affect you physically.

I have knnown people who have fully recover from MS, and also people who like my MIL seem like they are not willing to recover. although I'm sure she would dissagree with me on this.

I hope your brother has a good support network and a gp who has exhausted all other possibilities like underactive thyroid etc.

I know this sound very garbled but it is because my feelings are so mixed, like your. On the one hand my head is saying she is ill, it is not an illness that would confine her to a wheel chair but for her it might as well be, but then on the other hand I think, well why cant she just make the effort to meet my ds or to come to our wedding.
My DP is very good and has helped to feel supportive rather than annoyed as my annoyance only aggrivates her condition rather than helping it.
I dont know if this will even help except to let you know you are not the only one. If I could reccommened a few things for your brother, one would be exercise he enjoyed and the second most important one would be counciling.

HTH

My mum has had ME for years and years ... and I doubt very much at her age whether she will ever be rid of it now - partly because it took so long for them to put a name to the illness and try to treat her. However, as I understand it, the earlier a diagnosis is made and treatment/action is taken to try and rest etc. the quicker or more likely it is that a recovery can be made. I think it is perfectly possible that your brother has beaten it - especially if as you say he is able to walk around all day with no problem at all. That said, people with ME often have good days and appear to better but can then become bad again soon after. I know for a fact though that my mother, even on her best days, cannot walk more than a short distance. Sorry this probably isnt much help but if youve got any questions, let me know.

Is post viral syndrome the same as M.E or is there differences?

Wow, thanks for all your experiences. I agree with the mental health issue- which is why I'm so mad that he continues to smoke the drug he blames for his condition in the first place! I agree that exercise would be a benefit, but, illness aside, he is just hugely lazy. I think their diet also plays a part- neither of them will eat a single piece of fruit or a vegetable, another reason I'm so worried about this baby :( If they're not nourished properly I don't think, mentally or physically, any of them have a hope of changing. I'm so glad you've been supportive, I was convinced I'd get jumped upon for undermining M.E., when really I just want to try to help, which is hard when I really don't understand his mentality :(

littlelamb you are not undermining it. ME can be a vicous circle. If you have post viral syndrom you really do have very little energy, however this coupled with mental health issues can make these symptoms perpetuate. If you stay in bed resting all day your muscles are bound to waste. The less muscle bulk you have the less area for storing energy you have and so you do get tiered more easily.
A healthy perosn would take the aches and pains they have and deal with them untill they become 'built up ' and well again. something about a person with ME find this difficult to do. It is not to say that they feelings and symptoms they get are any less real to them. But they are harder for other people to understand IYSWIM

littlelamb, I had ME (albeit fairly mildly) for many years, from being 13 to about 21. I'm not sure about chapsmum's assertions about the 95% with mental health issues, but it was probably true in my case as I certainly suffered from depression for most of this time too (though whether the depression was a symptom of or caused by the ME I'll never know!). At 20 I developed chronic candidiasis (yeast infection which prevented my body from absorbing nutrients), went down to six stone in weight, had to go on a very restrictive diet for about nine months and take loads of supplements to build my strength back up. At this point I felt I was back to about 85-90% of my original health. When I got pg with dd1 I found that extra 10% and have never looked back!

ME has varying effects on different people - depression is common, so is muscular pain (I never had that), candidiasis is also fairly common. My ME was undiagnosed until I was 18 (my GP didn't believe in it) and my depression was never diagnosed (only looking back on my teenage years I realised that surely it was not normal to wake up every day and cry?) - but things have changed a lot since then (1984 when I first got ill).

All that said, I still managed to get to school, sit my exams, even managed to get through my first year at Uni whilst I had candidiasis (though that was a huge struggle). I had a friend with ME who was in a wheelchair for years though.

Difficult to say without knowing your db littlelamb, but it certainly doesn't sound like he has any intention of helping himself get better.

hey Miau, I got that figure from the dr handbook Kumar and Clark, it is usually pretty reliable but I could stand to be corrected
anyway get you online til I tell you my new plans!

Also what I would say littlelamb is that mental illness does not necesarily mean depresion. Mental health is a very difficult state for anyone to achive and in fact very few people have perfect mental health. We all have issue that we can cope with in someway or other. But Mental illnes can come from anxiety depression low self esteme, obsesive compulsive behaviour. I am not saying that all people who have ME are depressed. But I am saying that alot of people with ME do have mental healh issues which are less under control than 'healthy' people.