firstly, i'm very brain-foggy today so i apologise if this doesn't make all that much sense! i also apologise if this has been mentioned before!

i just wondered what people's opinions were on the suggestion that CFS might be caused by 'Cryptostrongylus pulmoni', which is basically a type of parasite that lives in the lungs [from what i can gather - please feel free to correct me if i'm wrong! :)]. apparently this parasite was identified in 63% of CFS patients who were tested, although there were only 30 participants which is a very small sample. i just wondered if anyone here has been diagnosed with this parasite, and whether or not any treatment has been successful?

thank you :)

Hi everyone
Just wondering if there is anyone in this community from New Zealand? I've made some wonderful friends through LJ that also have ME/CFS but am finding the lack of local support a bit tough at the moment. Anyone out there?? I'm going to try the local support group but thought I'd give this community a try as well.
Thanks.

Hello there!
I've never been formally diagnosed, but, after "not being able to wake up" for six years, and reading more about this disease, I'm pretty sure I have it. Every symptom is correct, and it answers questions I've had for years. Such as "Why do I sleep 18 hours a day, plus?" "why am I exhausted when I think?" "Am I really so stupid to say "tree" when I mean "printer paper"?" and "Oh god, I'm only 22, why do my legs ache so badly!?"

amongst others.

I've been apologizing for at least six years for "being so tired" and "I'm so sorry I just can't seem to wake up and function" and this now answers everything. I'd seek a formal diagnosis, but I can't afford (both in time and money) the extensive rigamarole they put you through to diagnose it. I'm afraid that because I'm 50lb overweight, they also would be hasty to blame it for my symptoms, although I felt this way long before I was "fat".

I just wanted to say hi, and that I feel among friends already, simply because I'm not  crazy. this is not  in my head. I don't just need to "loose weight" or "get out more" or "do something to make me feel occupied". (I admit I need to loose weight but that is NOT easy with CFS, I'm sure you agree! It might explain why I hurt so bad and was so sick for the year I tried weight watchers and only lost 20lb. :( )

Anyway... I'm going to bed, because its my bedtime, and I just took my benedryl to help me sleep, and I'm typing like a drunken baffoon. :)

New here. I was diagnosed with CFS in the summer of '99 after suffering from it for about 6 months. The first few years I was going to every sort of doc that was recommended to me, from acupuncturist to infectious disease specialist, and trying every treatment I heard of, from anti-depressants to Gatorade.

Well, I eventually got really sick of all that, and also moved from the US to Germany (where they know barely anything about CFS), so I haven't really done anything about the illness for the past few years.

My husband I want to start trying for a baby next summer, and I decided it's not too early to start paying more attention to my health. So here I am with a few questions.

1. I've heard a lot of people say they've lost weight since getting sick. Has anyone gained?

2. Is anyone here receiving treatment for CFS/CFIDS/ME in Germany?

3. Has anyone here been pregnant while sick? Any thoughts you want to share with me?

Thanks!

Hi everyone,

I'm about to start B12 injections. Doing them myself or possibly getting my spouse to do them for I am a total wus.

For those of you who are doing them, have you found a better/worse time of day to do them? Do they have any effect on circadian rhythms?

I am also taking a particular magnesium supplement with them and wondering the same thing about that.

For those of you who mess around with nutritional supplements, has anyone tried using different forms? In particular, I'm thinking about liquid vitamins and minerals, which are meant to be far more easily absorbed. I've just started taking Floravital, a popular liwuid iron supplement, and have my eye on Maximol, a multimineral complex with a few vitamins thrown in. (Note that I'm limited as to what I can buy since I'm vegan, and also that I'm in the UK.) It's a pricey way of doing things, but the ME has got so bad that I'm desperate.

For Co-Q10, has anyone tried the sublingual versions, and do they make a difference? What dose is best?

Hello! Long time lurker, first time poster, and all that...

I was wondering: Does anyone have any links regarding emotional overload and ME? Personal anecdotes are of interest as well.

I'm asking because emotional overload is one of my symptoms - basically, if I get upset, I crash. I get muscle pain/migraine/feel feverish. So, not unnaturally, I try to shield myself from things I know will upset me. Unfortunately, I have a few friends who are going through rough patches at the moment, and they (not unreasonably) feel rejected when I don't want to hear about their troubles.

Is there any way I can convince them I'm not being a heartless bitch? Advice/anecdotes/data are all very welcome. Thank you in advance! I'm glad to have found this group.

Hi,
There's a girl who works at a bueuty salon where I get my nails done every once in awhile. She's really nice and I'd asked her if she wanted to go out to lunch sometime, as she seemed to like talking to me as well. She said that she'd like that and we exchanged numbers. However, i've putoff calling her and making a time to go to lunch with her, as I've been feeling really crappy for the last month or so. My mom came for a week in may and since then, I've been having the worst relapse I've ever had. I asked the girl, who's name is Shannah, if we could go to lunch about ten days ago now. I know i need to call her soon and figure things out, but I'm very very nervous. When we go to lunch,
I'm afraid she'll start asking me the normal questions. What do I do in my spare time,why don't I work, etc. i don't really know what to say, how to bring up the fact that I have CFS to her, or how much to say about it, or not to say. i want to tell her about it, because if she's going to be my friend she needs to know, but I have no friends here and I'm very afraid that if I do tell her about my CFS, she'll stop wanting to be my friend and I've been trying to make friends here since I moved here, over three years ago. The friends that I have made previously,always seemed to end up having some excuse why they couldn't get together with me, or ended up being too busy to spend time with me. I don't want that to happen with Shannah, before I even try to start a friendship. At the same time however, I don't want to lie to her and make up a full life of excitement and stuff that I don't have. So I don't know what to do.
if you have any advice, that would be great. I hope I'm making sence, I don't really feel like I am at the moment.
Hugs to all of you,
Dawnielle

They're disallowing my DLA. I'm sicker than I was last time around yet, because my diagnosis has changed from depression to ME, I'm no longer allowed benefits.

What a load of crap.

Hey guys, me again, sorry, if you could please spare a little time to fill in this questionaire, i'd really appreciate it ^^


1.Are you registered disabled?

2.Are you currently employed or in education?

3.If so what are your average working hours supposed to be?

4.What average working hours can you manage?

5.Are you on any disability benefits (of any kind)?

6.If you are employed/at school has your place of work/study done anything to assist you?

7.Do you feel your place of work/study could do more to help you?

8.If yes, could you please specify...

9.Would having ergonomic equipment help?

10.Would having a place to rest help?

11.Do you also suffer from Seasonal Effective Disorder (SAD)

12.Do you feel employers/schools should be provided with information about CFS?

13.Do you feel comfortable providing this information yourself?

14.Would an information pack you could provide to your employer/school about what they could do and what CFS is, harm or help your situation?

15.Should this information pack be written/complied by sufferers or doctors?


Thanks again!