Chronic Fatigue Syndrome Support Group

Chronic Fatigue Syndrome (ME/CFS) describes a sense of exhaustion and post-exertion malaise, even when you have gotten enough rest and sleep. The disease is characterized by six months of incapacitating fatigue experienced as profound exhaustion and extremely poor stamina, and problems with concentration and short-term memory. The cause is unknown, but it is a...

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Starsister 05/27/2017

I just tearfully finished watching for the 3rd tine is 17 years, the film by Kim Snyder called I Remember Me. It came out in 2000 and I first saw it as our local Fibromyalgia/ CFS organization had a showing at a local theater. I'm not sure if it hit the main film circuit or not, but the writer, producer, and fellow CFS survivor has since produced many award winning films. The film is a documentary about CFS and its long history in the US and worldwide. She tells of the first "outbreaks" in various parts of the US, with one in 1985 getting national media coverage, how the CDC redirected funds to other diseases that had been earmarked for CFS research. After all these years I found it re validating of my experiences and feelings, and the medical and social stigma that comes with it. So many famous and well accomplished people have been diagnosed with it from the 1980s. I hadn't heard of CFS in the 80s and early 90s but I had to just start referring to it as "my mysterious illness" to try to explain to my friends why I would have to cancel plans abruptly, never being able to predict how I whether I would be functioning or not. It seems many of us were coming up with similar terminology before the CDC gave it a name. So many of us being blamed for it being in our heads, or psychosomatic, so the medical system could just ignore us. The film reminds us that until recent history, MS was considered a psychosomatic illness, or " malingering".

I had forgotten that the Buddhist nun and teacher, Pema CHodron, has been diagnosed with CFS for years.....mind/body/spirit guru Pema! I used to love listening to her tapes, but was unaware at the time she was a sister CFS survivor. It looks like it is available through Amazon streaming but it must also be available elsewhere. I still have my old VHS tape feel inspired to keep fighting, having watched it again. I would love to see a remake of it to include any new med info we have learned. (ha, probably nothing!)

triunfadora 05/27/2017

Would you believe I have never heard of that movie? I'm going to have to look it up. It sounds fascinating. Thank you for this post. Many blessings.

Starsister 05/28/2017

Possibly not many have unless they had an active CFS community in their area when it came out. But it must have gotten around as i found a really great review of it by Roger Ebert. It is not pretty to watch so it wouldnt have much of an audience but survivors and their families.

DarlaC 05/28/2017

I've seen it several times. We need more films like this. But even though the "word" is out there, CFS still continues to be ignored.

I have learned to stop apologizing for missed appointments. I'm just tired of it, I guess.

As I've said many times, some REALLY famous person would have to take the CFS tumble out of life, before we will ever be taken seriously. Very sad.

There is always hope. I'm so thankful for many blessings in my life! Let's hang in there!

aussiedi 06/20/2017

I can't remember if I've seen it. Guess not. I will watch it and find out. The title "I Remember Me" really stabs at my heart. I have been ill with CFS since the mid eighties and memories of a healthy energetic me have faded and feel like a past life. I'm bedridden again and DS hopping to save my sanity. At least today we have several dedicated research teams on our side and identifiable biomarkers showing up. So things have changed for sure. I really want to hold onto hope, but it has become so difficult. With gratitude , I feel for you all.

Starsister 06/20/2017

It is very interesting how so many of us started have symptoms as early as the 80s. There is speculation about what was going on then environmentally that triggered things in so many. Or around the same age. In the 80s my sensitivity grew from just tobacco smoke to newspapers, and then perfumes, now scents of any kind..so it felt like an environmental illness...but that is when I also started to have pain in my feet which I now know to be neuropathy which has moved up my legs and to my hands, arms and all over my body. I also had terrible body pain which I attributed to a very stressful job, so left the job, went back to school for a career where I could work my own schedule, as I just had a strange feeling what was going on with me was going to continue to be untreatable. I'm grateful I can do some work, and then lay down in my bed and turn all lights and sound off to recharge. Then get up and do more activity at my pace. Pretty much rules out having anyone I my life though, as my routine has to revolve around my own needs. Im glad you got to have a spouse and kids before you became ill. I never had a permanent partner or kids and at this age nobody wants me for sure now! i know many couples where one spouse is very ill and disabled, but they are relationships that started when they were in there 20s or 30's before health challenges. They've raised kids and grandkids together and are committed for life, but I've not found anyone who wants to start up a relationship with someone who is ill and at the later stages of life when there aren't the shared bonds of children already established.

aussiedi 06/21/2017

I admire your independence Megan. Despite all your physical disabilities, you manage to take care of yourself on your own. I am very dependant on my husband and that really frightens me. I'm also hopeless at living on my own. I get all spooked out at night. I have connected it to past trauma though, however it's still not good. I want to be a strong resilient independent woman. Fat chance now lol! Seriously I truly admire so many women here on DS who are very ill and on their own.

LoriInAsia 07/08/2017

Thanks for posting about the video :). I just looked it up and watched it. I also found a newer one called 'Forgotten Plague' that was good as well.

Starsister 07/08/2017

Lori...thats great you found it! Were you able to stream it from the internet? Just curious as id like to let others know how to find it..mine is an old VHS! Thanks fkr the info on Forgotten Plague..i hope to find it and watch it.

aussiedi 07/08/2017

Hi there. I tried to watch "I Remember Me" and it said..not available in this country. Not sure why. Are there any other Australians here who have seen it?

LoriInAsia 07/08/2017

Megan54 and Aussiedi I streamed both from Amazon. I had trouble finding I Remember Me. I know that one is only available in the US. I live in Cambodia and used to live in China so I use a VPN for my internet a lot. It encrypts connections for security but also makes it 'show' to websites that I am in different countries. I can log in through the U.S. For Amazon or from different countries (Olympics we needed to access through Canada and the UK). Probably too much hassle for most people to try... But you can get 30 days free of Astrill (the VPN we've used for years). Then you can access all Amazon stuff from the U.S.

Starsister 07/08/2017

I did see they were both offered on Amazon..which offers a 30 day free trial if that is offered in Australia. But ive already used my free trial, so am dwbating on whether to rent or buy the Forgotten Plague. Says its offered on you tube also but all i could find was the trailer. Lots of other info on you tube on cfs though....going to keep checking out if there is new info. Looks like Plague is from 2016..but sounded like still no funding for research or support in medical community. Id hoped things had changed more since I Remember Me.

Starsister 07/08/2017

And Darla etc....looked up famous peeps like Cher and other celebrities who admit to having cfs...but still only in low profile. Is it still too stigmatizing even for celebs to admit it and be advocates?! Also..there is a shorter documentary on YouTube of the man and his family who are featured in Forgotten Plague. I need to watch something with a broader perspective, history and variety of stories though. So many that wind up on youtube are only showing the most dramatic and tragic examples it seems and i wind up feeling so hopeless. I need to learn about the science and political advocacy going on if im going to keep going. With no family left, and total social isolation, things are just too bleak for those of us without family to speak for us.

LoriInAsia 07/09/2017

megan54 - Forgotten Plague has more on the science being done now. My mind is pretty fuzzy but it seemed like I Remember Me was more the stories and the Forgotten Plague had some interesting biomarker things that I hadn't read about before. But still based around stories. Both helped me because I thought I was a severe case being stuck in bed, but I have never got to the place where I can't feed myself or make it to the bathroom. It put it in more perspective for me. I still really hate where I'm at, but I can be thankful for the movement I do have :)

You might also like 'Chronic Fatigue Syndrome: A Treatment Guide, 2nd Edition by Erica Verrillo (Author)' also on Amazon. My husband got it for me when I couldn't handle any noise and just could read. I feel it isn't named correctly as it isn't a book that tells you what you are supposed to do to get cured. ... I really struggle with those books because I am desperate for a cure but there isn't one so running after a new diet or some other thing always feels like a dead end and leaves me depressed. Instead this book is written from a journalistic perspective on all the history, science, testing, treatments that are being used out there. It was informative and encouraging for me and I go back to it often. It has all the symptoms, supplements, and medications all written out in sections easy to use as a reference to see what different people are doing. It isn't answers, but just presenting all the information, which I really like :)

Starsister 07/10/2017

Lori, yes, that book sounds interesting. Guess we need all kinds of stories and info. I need to hear the stories of folks who are like me, those not so bad, and those worse, just to keep it all in perspective. I know when I read many experiences since I joined the online groups, I have found it easier to focus on my gratitude for the things I can accomplish. I feel so blessed compared to many. Granted many on the online groups are those who are SO ill they can't make it to any in person support groups so likely to hear of most extreme cases on these groups. During my last flare up of symptoms, and the sudden disbanding of our long time local group, i finally out of desperation started googling and found this group, and then someone mentioned the Phoenix Rising group which has been great for more medical and treatment oriented details. But not quite as personal as DS. Been so long since my main debilitating thing was CFS or fibro....rather than my spinal degeneration, that I'm having to learn new, and re learn old I go I'd forgotten about in terms of lifestyle, nutrition, etc. I'm so sorry to hear you are one of the ones bedridden at times. I'm tending to stay in bed most days sometimes but need to force myself to get up and fo things or I WILL become bedridden from lack of strength. So confusing to know when to push oneself and when not to. Yesterday I went to a birthday party of a friend and barely moved out of a comfy chair for 3 hours but between the noise, eating wrong foods, and stress of trying to talk with others, I wanted to spend all day in bed today with my soft pjs, and super soft sheets. But part mental I know...just depressed and no motivation to get up more than Necessary. Keep hanging in there!

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