Discussion in 'Advocacy Projects' started by RYO, Jan 15, 2018.
You can now stream Unrest on Netflix.
It became available in Australia, on Netflix, yesterday. I guess it should be available on all Netflix services, but each is semi-independent when it comes to shows.
Kudos to Jennifer Brea for getting movie on Netflix. It should exponentially increase potential viewers. This is exactly what the ME/CFS community needs for disease awareness. Maybe a show like 60 minutes on CBS will consider featuring Unrest and the plight of ME/CFS patients with interviews with patients and researchers.
Be sure to give it a like and/or add it to your Nexflix list.
Done. I loved it. She did such a great job. I hope it gets more viewers on Netflix, but you have to type it in to watch it. Very impressed. Love Omar, too. Great guy!
I wasn't going to watch because it's all too depressing, but I'm glad I did watch... She did a great job, and now I feel like I can point ppl some place... I can tell them to go watch this movie instead of explaining, which I hate b/c I sound like a whiner/crazy/loser...
Yes, did this myself earlier today.
Last night, I viewed this extremely moving and heartbreaking film. It's so important to show it to ministries of health, to researchers, to pharmaceutical companies. Media attention is important too. My heart goes out to Jen and Omar. They are lucky they have each other and do not seem to have financial stressors. But even with love, etc. it's a very very difficult road they are on. Dr Klimas was very impressive and extremely convincing about the problems in the immune system and the mitochondria. Did I misunderstand, or was she somehow comparing it to aids in the immune deficiency sense?
How can we increase the sense of urgency about this monstrous illness?
I felt the same.... I'll admit I completely sobbed in places - the shoes killed me....when Jennifer broke down in severe PEM after the rally... but strangely, amidst my pain, I felt such a deep, loving connection to so many in this world suffering as I; and such a enormous respect and gratitude for all those wonderful people out there like Ron Davis trying to do everything in their power to help...to them, I am eternally thankful. To us, I am forever in hope
Dr Klimas (from memory) recounted explaining to a patient with ME/CFS that they had a comprised immune function and how she was shocked that the patient was grateful i.e. for being believed.
I guess Dr Klimas found evidence of impaired T-cell functioning.
Check out Neil McGregor's you-tube presentation at the 2017 OMF symposium; he showed genetic mutations linked to immune issues (aids gets a mention re mutations and increased viral load).
Check out Mark Davis's presentation; he demonstrated T-cell clonal expansion similar to that found in Lyme disease (and others).
Re funding, check out Alex's blog "When Will We Get Enough Research? Blog entry posted by alex3619, Jan 25, 2017".
I spoke to a friend re barriers to applying for funding in Europe (Horizon 2020 etc). Basically it's a lot of work, i.e. to submit a bid, and the chances of getting an award aren't good.
If you know someone who knows how the European funding system works then that might be useful. E.g. in response to question E-006901/2017 re funding for ME/CFS the European Commission states that "no specific projects on ME/CFS have been supported" and "bottom-up approach of the Horizon 2020 calls for proposals provides applicants with freedom in the choice of their investigations". Lyme disease got 40 million euros in 10 years re diagnostic tests etc;ME/CFS got zero.
Possibly gender may be a way to tackle this e.g. most people with ME/CFS are women, lack of funding for ME/CFS research -- is a gender equality issue. A candidate in an election will not want large numbers of women asking (via social media) about his/her failure to support funding for research for woman's diseases. So ask your elected representative, via social media, where they stand re funding for ME/CFS (check out Unrest/Ted Talk). I.e. try increasing impact by lobbying for equal funding for woman's diseases.
You can tell that I don't lobby professionally. I've been told that one way to run a media campaign is to go for rational;note Alex's figures re cost to the economy of ME/CFS. Another is to go for emotion. I'd suggest "unfairness" linked to gender equality.
Possibly a "diagnostic" test, e.g. an MRI test re elevated lactate in cerebrospinal fluid, may bring about a change in attitudes to funding ME/CFS research. I.e. you will have a real disease not a psychological problem.
Just watched Unrest. I sobbed for most of the movie. The movie touched on suicide and featured an article about my friend Patrick Kelly's suicide and I just broke down. It was totally unexpected yet I had lit a candle and put it by his photo before watching! R.I.P. Patrick, you were so intelligent, compassionate, articulate, and creative.
I have struggled with idiopathic CF and aerobic exercise intolerance and do not technically have CFS. However I could relate to the struggles of the individuals in the movie and my heart breaks for all of them, and you, the people on these message boards. I have been bed-bound before, especially in the first year of my illness.
If this documentary raises awareness by decreasing stigma and helping funding for research then what a milestone it is! Personally just feeling so invisible regarding my illness, and misunderstood, I feel so much gratitude for Jennifer Brea. Visibility is key and invisible illnesses/disabilities need attention. Interesting fact that more people have CFS than Multiple Sclerosis yet the funding doesn't compare. It is such a lonely experience to be outcast while other people with illnesses like Cancer have strong visibility in a communal way and a lot of support. ALL people with illnesses deserve support, love, and encouragement. I wish people could be as compassionate as Jennifer Brea's husband.
First of all I tend to be Mr Angry; therefore, reader be aware.
This film has left many of us feeling the same way.
If you check out this 2017 paper "Elevations of Ventricular Lactate Levels Occur in Both Chronic Fatigue Syndrome and Fibromyalgia" by Shungu DC (and others). Here's a comment from the author [Shungu] "Personally, and this is the next phase of our research, I believe that oxidative stress and neuroinflammation, and possibly a secondary mitochondrial dysfunction, may all be ‘co-conspirators’ in the etiology of most of these unexplained and highly overlapping and related multisystem/multisymptom diseases like ME/CFS, FM, Gulf War, IBS, etc" [quote is from an article on the paper - Cort Johnson]. I suggest you take the authors word for it (until there's scientific evidence to the contrary) i.e. don't focus on the label you've been given since there is no biological test underpinning it e.g. high levels of lactate/low glutathione demonstrated by this study.
By the way Shungu first observed the high levels of lactate/low glutathione in 2002 i.e.15 years prior to the 2017 paper; why wasn't this followed up/replicated? Shungu is at Cornell; Maureen Hanson, who received one of the NIH ME/CFS research centre awards, is also at Cornell. So hopefully we won't have to wait another 15 years.
The question is how do we/can we get access to Magnetic Resonance Spectroscopy "MRS" (it's similar to Magnetic Resonance Imaging "MRI") i.e. the technique used by the author.
Jen in the film points out that some/many doctors didn't accept that MS was a biological disease right up to the day they wheeled the first person into a (PET?) scanner which showed demylination of large areas of the brain. There's a radio program called "the long view" which looks at current topical issues from a long term perspective; it seems like those with ME/CFS are being treated in the same way as those with MS i.e. not being believed .
Alex Mayer, British Member of the European Parliament (MEP) asked the only question on funding for ME/CFS [Google "E-006901/2017"]. The European Commission funded Lyme research i.e. $50 million in 10 years; zero for ME/CFS. Alex is keen to ask a further question; your comments re consequences/isolation etc. seem to be a very good approach. It doesn't matter if your not from European Union the problem re lack of funding/social isolation etc. are the same. Is there anyone who's prepared to contact French, German ---- MEP's to try to raise the profile of ME/CFS and try to get funding for research? You can see the money available e.g. from the spend on Lyme i.e. $50 million. I've done some of this myself, with very limited success.
Try Linda Tannenbaum, CEO/President Open Medicine Foundation (OMF), for suggestions re raising awareness.
How do we/can we get access to MRS; it may mean that people with ME/CFS are believed i.e. that they have a real illness. What is the cost where is it available?
I am at the NIH trying to make it through phase 2 of intramural study. One of the nurses looking after me witnessed me crash after coming back from grueling test on Friday. She watched Unrest yesterday and today while I was in the metabolic chamber, she told me she cried while watching movie. I have encouraged other staff and doctors to watch the film.
I'll provide an update about phase 2 in another thread when I get home.
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