For those of us who are chemically sensitive, or just care about the world at large, the following article from The Age newspaper makes somber reading.

I don't know why, but I can't get the article to go behind a cut so here is the link
www.theage.com.au/opinion/paying-a-high-price-for-jeans-20081010-4yf2.html

Sorry if this has been brought up before. I did look through the archive but couldn't find anything already on the subject. I was wondering what this commuity thought about EFT. Has anybody here tried it?

I've been giving it a lot of thought over the last few weeks as what I've read and seen so far makes a lot of sense. I'm seriously considering starting this therapy within the next couple of weeks (I have nothing to lose but a lot to gain potentially, right?) so I'm eager to hear first hand accounts especially from others with ME/CFS.

Now I'm feeling a certain amount of trepidation if I'm honest - there is a fear that it will all come to nothing (trying not to get my hopes up is proving a little trixy) but also, what if it actually works? And what would it say about ME/CFS (or any serious illness) if it can be cured in some individuals with a few taps and positive mantras?

Would love to hear some thoughts on this subject :)

But I feel I have to have a rant.

I know this may piss people off and I don't care. I'm saying it.

Imagine you're ill. Imagine nobody believes you, imagine everybody tells you to 'snap out of it' and 'pull yourself together'. That what you have isn't a 'real' illness. That you're somehow faking it, that you're not 'really ill'. Sound familiar?

It is precisely this scenario above which is what angers me so much about some of the offensive and ill informed opinions that hold sway in the M.E/CFS community about mental illness. I can't count the amount of times I've read comments along the lines of 'But I don't have depression, I'm really ill!' and 'It's not depression, I'm not making it up!' and 'M.E is a REAL illness, it's not mental'. I do not for one second suggest M.E is depression, or that M.E is a mental illness. However mental illness is real, depression IS real, my depressive disorder has had a debilitating affect on my life, just like my M.E has.

I've had to deal with all the malingerer and 'faking it' misconceptions with my M.E and it hurts, to have to deal with them again but from the people who I figured would understand is even worse. To see sections the M.E community buy into the offensive stigma surrounding mental illness hurts me, it makes me angry. Yes M.E is NOT a mental illness but some of the comments I have read in the M.E community have been downright offensive towards those who have a mental illness, and while a miss diagnosis of any medial condition is to be avoided, the bile and fury with which people defends themselves against being seen as mentally ill, as 'not really being ill' is offensive. The fight to have M.E recognised as physical illness and not mental is all very well but it is often home to an underlying current of prejudice and misconceptions against mental illness, and it turn the mentally ill. Reinforcing the stereotypes that the mentally ill are something society is ashamed of, something they hide away.

So please think twice before posting things along the lines of 'I'm relived that people have said I have M.E and I'm not just depressed '. or 'I'm not mental ill I'm genuinely ill!" As someone with a misunderstood illness, as someone who has all that 'pull yourself together' bullshit thrown at you you should understand, don't do what you hate others doing to you. You'd find it offensive if someone said 'Thank god I've been diagnosed with Lyme Disease (just using an example here) and it's not just M.E , I'm actually really ill!'


Being mentally is IS being 'really ill' and it's downright offensive to suggest otherwise.

x-posted to Diary of a Nobody - http://anothernobody.wordpress.com/

I realize some of you are unable to work at all, which is obviously a much more annoying situation than mine. But for those who like me have some sort of job or other external commitment, how do you balance it? Are your workplaces very helpful/sympathetic?

I’m a bit flaily about it all so sorry for rambling. I only just got diagnosis of cfs (though I’ve suspected it for some time) and the doctor was pretty flaily herself about her inability to offer me advice, I’m still looking for a doctor who seems to know anything helpful about it at all. (Someone from this community found me a local expert via google, and my next plan is to make an appt with them now that I’m done dealing with some tests with my old dr)

( in which I meander about work )

I was wondering what other's experiences have been going to rock concerts. I do not have a wheelchair, but am unable to stand for more than 20 minutes, or sit in chairs that do not support my upper body that long. I haven't been to a rock concert since I became disabled, and when I consider it, it becomes a nightmare in my mind to imagine a venue where everyone is constantly standing around me and I'd be unable to see.

The one concert I came closest to going to, I was able to find out what kind of chairs were available and they were simple straight backed chairs without armrests, so I didn't inquire further, but these are the kinds of things I need to consider.

I know things are supposed to be accessible, but I don't know who to talk to when it comes to places I am unfamiliar with to be assured I'd have a pleasant experience. I've also had bad experiences, like when I tried to purchase an Amtrak ticket with a disability discount, of "proving" I qualified, like I'm supposed to have some kind of ID card.

Hello,

I'm new to this community so sorry if similar things have been discussed before, but I didn't see anything about it.

Question: Has anyone ever tried ribose for energy, and what was your experience? What about prozac? Obviously the more natural solution sounds more appealing, to me at least, but I have had anxiety all my life plus a nervous breakdown this summer which resulted in a flare-up of my CFS symptoms as well as my going on psychiatric medication. I am currently taking klonopin and I was taking celexa but the celexa made me feel so fatigued and I felt like the lack of energy was making all my symptoms worse. (my psychiatrist finally agreed to let me stop taking it, but he wants me to switch to prozac which he said will give me more energy). So now I have a bottle of prozac and a bottle of ribose and I haven't tried either. I just wanted to know if anyone had any personal anecdotes with either. If anyone has successfully taken ribose how long did it take for you to feel any effects? I don't want to start both together because then I won't know which one the effects are from. Should I should try the ribose first, since the prozac would probably take a long time to work? I heard about ribose by reading the book "From Fatigued to Fantastic" but in that book he also recommends prozac for certain CFS symptoms as well. Any personal experiences or opinions either way?

There's been some discord lately and I feel I should address that and give some gentle reminders for all community members.

We all have to remember that CFS/ME comes with varying degrees of severity and symptoms. It's sometimes hard to remember that when you're struggling with your own symptoms on a daily basis and that becomes your definition of what this illness is to you. How the illness manifests itself in another could be completely different from your experience, but it doesn't make it any less real for that person.

This community is a safe space for all people with CFS/ME. All levels of severity may be discussed with respect and tolerance. We are not here to judge if someone has it better or worse than us. We are all struggling with our unique situations. I don't want anyone to feel uncomfortable posting about theirs or seeking advice.

We're all in this together. Let's please try and remember that when we post or comment. Thank you.

Anyone else have these symptoms? Do you think they're related to or exacerbated by CFS?

1. Bad dreams. They started about 6 months after I got sick and have stuck with me. I have almost only bad dreams, ranging from stress dreams (like having to go to the airport but unable to finish packing my bags) all the way to really gruesome, terrifying nightmares of amputation, zombies, and death. I think they're CFS-related, but not really sure.

2. Shifting sleep schedule. When I let my body do what it wants, on average I tend to sleep about 12 hours a day then stay up for about 14. This means I'm always waking up and going to sleep at different times, though being awake nights seems more comfortable. I would love a part-time job, but this shifting schedule makes that impossible. Trying to control my schedule is usually frustrating and unsuccessful, and leads to sleep deprivation.

3. Sun sensitivity. Or more accurately, I can get really uncomfortable in the sunlight. When awake during the day, I tend to lower the blinds and turn on the lamps to avoid the sun. I'm always the first one to put on my sunglasses and the last one to take them off. As I mentioned above, a night-owl schedule is most comfortable for me, maybe because I dislike the sun.

4. Weak skin. In the past 2 or 3 years, it seems like my skin has become way more sensitive. Any little scratch will break it open and leave a scar afterwards. I've had to change make-up brands, shampoo and conditioner, and skin cream. I also get sun burned way easier than ever before.

How do you all combat drowsiness?

Of course, I do my best to eat well, get enough quality sleep, and so on. But even when I'm doing everything right, without medication, I need a 2-hour nap every afternoon, which makes it really difficult to get stuff done.

So I have been using caffeinated drinks medicinally. I used to have one average-sized cup of coffee in the morning and another one mid-afternoon, but I would be very drowsy by about 5 or 6 pm, and would go to bed at 8:30 or 9 after an awful evening of forcing myself to stay awake and not being very effective at anything. I've recently been trying to have three small cups of coffee (maybe substituting soda or tea for one cup), spaced out so the latest one is at about 5:00; this seems to have me get sleepy around 10:30 or 11, which is perfect.

But there are difficulties with this method: One, sometimes I'm just not in the mood for a drink at these times. Two, sometimes it's inconvenient to get a drink at these times, or I forget because I'm involved in other things. Finally, they're all sweetened with artificial sweetener (usually Splenda in the coffee) since I'm off sugar at the moment, and that seems like a lot of chemicals to be ingesting. I don't like unsweetened coffee. I guess I could drink unsweetened tea, but blecch.

At times of drowsiness, I also have the constant temptation to use sugar as a stimulant, which is nothing but awful for my body.

So I'm wondering if I should just switch to a daily regimen of caffeine pills. But the other issue with staying on caffeine is that (I think) people get acclimated to caffeine and have to keep upping their dose. I haven't really had this problem, but maybe I could in the future.

Once upon a time, a doctor suggested I take drug called Pro-vigil, developed to keep armed forces members awake when on duty. At the time I thought I really required all the rest my body seemed to be demanding, and I dismissed the doc as "not getting it." But based on my experience with caffeine, I'm realizing that the drowsiness is not in fact a body signal. I feel the same at bedtime and the next morning, regardless of whether I take a nap or have a up of coffee in the afternoon.

So, has anyone had any experience with Pro-vigil or any other stimulants for combating drowsiness? Any natural methods you could recommend, like splashing my face with cold water or taking a walk? I appreciate any help you all can give.

Hi,

Does anyone else experience what seems to be alot of heart symptoms i.e. racing heart, irregular beats.? I've had my heart checkede a few times and it's been fine, but whenever I have a bad relapse I feel these symptoms again and I'm just never sure if it's my heart or part of the cfs.  

Thanks