Thanks for letting us know about the film! I am definitely passing this information on to a friend of mine who is struggling with an unknown illness, probably autoimmune, and who has a lot of the symptoms of CFS.

Thank you so much for this info, Comtesse! I will definitely watch this documentary and pass it along to spread the word. It will be a good reminder of what is happening in your life on a daily basis as we correspond on the forum. I so appreciate your presence here, your wisdom and humor and your good advice. Thank you for sticking with us, even when sticking with anything is extra hard. Carol

Thank you. I'll watch on Netflix. I binge watched the first season of Big screams, Little Gardens and one of the gardens was being designed and built for a little girl with Chronic Fatigue Syndrome.

Thank you comtesse, I will definitely watch it. It's all the more interesting to me since I've become very weak over the last month or so, to the point where I can do almost nothing without great effort. I still feel fortunate compared to how you and other people afflicted with this horrible disease are forced to live your lives. It must take immense courage to even want to go on. I've often wondered whether autoimmune diseases may be caused by the immense amount of environmental toxins that we in the modern world are exposed to in what we eat and drink and are exposed to in the environment around us. Please take care, dear comtesse. Our thoughts are with you.

Thank you, Comtessa. I will definitely watch this. I am not sure what is happening to my younger sister who is very stubborn to go for hospital visits. She can't look after her kids nor clean or cook. Always saying she is so, so tired. We ( as my whole family ) never heard of ME/ CFS.

Although, everyone in family been very supportive and encouraging her to seek for medical help.

Pls take care of yourself. Will be thinking of you .

Thanks

Jin

Thanks, Comtesse. I appreciate your taking the trouble to post this. Melissa

I'm going to watch it too. Greater awareness and funding can help let's hope.

I watched it and was deeply touched, and am still haunted by it. The list of deaths at the end, many of them young people and I suppose some if not many caused by suicide, is heartbreaking. Autoimmune diseases as a whole seem to be a hard nut to crack. Fibromyalgia is much more adequately funded but there still are not any outstandingly good drugs to combat the symptoms,and no one seems to know why women mostly get them (except for the one my husband has which is primarily experienced by men 65 years or older). I don't expect them to find any definitive answers in my lifetime.

Thanks so much to all who took the time to read and comment on my post, and for the great warmth and kindness of your responses. I must say I was nervous about posting; while realising many of us are going through very challenging times with our and our loved ones' health, speaking about this always feels quite excruciatingly personal, like revealing an ugly scar in public... but I was determined to do something for awareness day this year, having failed for several years in succession to contribute.

I'll try to respond to every comment, in order:

KS: You're welcome, and I do hope the info will be helpful to your friend. S/he should definitely watch the movie!

Re symptoms: ME/CFS has an enormous list of around 40-50 symptoms, involving every body system - someone once said ME seems to include just about everything you could possibly experience with any illness, or words to that effect. We each have our own selection of them, to varying degrees of severity, which, once we're sure we've got the hang of dealing with them, morphs into something else! Or so it seems...

If s/he hasn't already, your friend may like to google the (most comprehensive) Canadian Consensus Diagnostic Criteria for ME/CFS and the (most up to date, I think) International Consensus Criteria, which between them have a full list of symptoms, and explain which ones are currently thought to be essential and which are optional for an ME/CFS diagnosis. A full set of blood tests, etc must be done too, to exclude all the other known medical and psychiatric conditions that could be causing that individual's symptoms. There are also some excellent websites/forums to visit for more support and info, such as Phoenix Rising and Health Rising. Please pass on to her/him my thoughts and best wishes.

Fig Insanity: You're welcome too, and thank you for your kind remarks. I'm so sorry to hear of the frustrating time your sister went through for so long, just trying to get someone to even believe her. Unfortunately she was by no means alone in her experiences. The continuing level of ignorance and prejudice amongst doctors against this disease is actually really frightening, an actual, genuinely Kafkaesque situation, which is especially difficult to deal with when one is getting increasingly physically frail and cognitively wooly, and no-one will believe your story or take you seriously: thus the urgency of need for education and awareness, and MUCH more quality bio-medical research to help dispel persistent, popular myths of 'female hysteria' and other such bizarre, often misogynistic, non-evidence based psychiatric theories. (MS was similarly regarded, until the invention of the CAT scan (IIRC), which instantly showed the physical cause of the symptoms.)

Some stunningly bad science in the UK, published in The Lancet in 2011, purporting to prove the psychiatric theory (heavily subsidised and enthusiastically pushed by the Government and big Insurance companies) set us back a few years, but has fortunately now been thoroughly debunked. However many doctors are not up to date with this, and still resort to offering 'encouraging' therapy aimed at dispelling our 'false illness beliefs', prescribing antidepressants, and forcing very frail sufferers to follow increasing exercise regimes, which have been shown time and time again to be at best ineffective and at worst, to have dramatically deleterious effects, rendering previously unwell but still mobile people bed-bound for years, and occasionally even killing us.

Many of us eventually give up on the medical profession altogether. Unable to find or access knowledgeable physicians, we're forced to take care of ourselves as best we can, at home, sometimes for decades/the rest of our lives. Not uncommonly abandoned by disbelieving family, and friends with whom we're no longer able to keep up socially; invisible to the wider public; we use Dr Google and the worldwide online patient community, along with whatever inner resilience we can muster as our resources. In many cases, this is actually a far safer option than undergoing misguided treatment from doctors and hospitals. And this is not a rare disease; unseen millions of us are just coping, behind closed doors, with little or no medical care or basic social support. What this can mean in practice is too painful and embarrassing to go into.

SunCoastFlowers: You're welcome, and thank you for committing to watch the movie! Do post a review (good, bad or neutral) should you have the time and inclination.

Do you by any chance have a link to the series you mentioned, and the episode about making the garden for the little girl with ME/CFS? I did try googling it but didn't have any luck.

Well, I've waffled on again for far too long and am going to have to take a break. Carol (PMR), my apologies, I seem to have jumped past you in order. Will come back and respond to you next, then Ingrid, Jin, Melissa and Sheila. And maybe, be a bit briefer... (unlikely). ;-)

No need to reply to me specifically, Comtesse! Your reply above says it all. Thank you so much for sharing this important piece of your life with us. Take care of yourself! Carol

Likewise here, Comtesse. What you've said above is so compelling and poignant. You've painted a portrait (as has the film) that is so dark and almost hopeless of this disease process. The ignorance and misunderstanding of the medical community is appalling, and surely must increase the feeling of isolation and desperation of those afflicted. It seems as though they're just crawling out of the Dark Ages, in part I suppose because doctors like to have something definite in front of them that they can "fix" with drugs and regimens. A disease with so many symptoms, which in any particular patient can then morph into new patterns, must be frustrating to their linear minds. I wonder, too, if anything meaningful can really be done until they find the root cause of this and other autoimmune diseases.