"Unrest" Documentary Reviews

[Esther12]

People can get some misguided views about the ease of identifying 'ME' as apart from 'CFS' and the meaning of the two diagnoses. Then that will lead on to harm. It's another reason why we need to keep challenging each other's beliefs and pushing towards the truth.

On the plus side, it was only 3 one star reviews (when I looked).

 

[MAOAr297r]

I think that there is one user writing multiple negative reviews. They are amounting to 18% of reviews right now. If everyone can go and give it a 5 star review that will help drown them out. Sadly on google play the troll is called “phoenixrising”.
https://www.amazon.com/Unrest-Jennifer-Brea/product-reviews/B075LS2QN3

https://play.google.com/store/movies/details/Unrest?id=iTC0y4l1Jgc

I just wrote a 5 star review. I understand if someone wants to be silly and troll a music video or something but it's sick to troll something like this

 

[Solstice]

I just wrote a 5 star review. I understand if someone wants to be silly and troll a music video or something but it's sick to troll something like this

It isn't trolling. It's angry advocacy at the wrong time and place. I've seen it a number of times before, likely from the same person. Attacking bloggers that were sticking up for us etc, attacking (good) science that uses the lable ME/CFS. Because of the cfs is not me thing. Understandable thing to be mad about, but there's a time and a place for it and it's not when huge things in our favour are presented.

 

[Hajnalka]

If everyone can go and give it a 5 star review that will help drown them out. Sadly on google play the troll is called “phoenixrising”.

Great idea! In addition to Amazon, Unrest can be rated (with one click) and reviewed on many other sites like iTunes, IMDb, rotten tomatoes and many more. This is some really easy to do support and advocacy.

I've seen it a number of times before, likely from the same person.

Sadly, I think it's more than one person. I've seen several people openly boycotting Unrest on social media and even come into volunteer groups to complain (just because on one info sheet on the Unrest website a link to the IOM report is listed - together with pages of information and many other links e.g. to the CCC and ICC and a pediatric primer - the movie is now alleged of "centering" around the IOM definition). They also claimed Jen as a "newbie" to ME shouldn't do advocacy. There are Germans like this too (because it was suspected it was someone from the Netherlands).
People on social media wrote they boycott Unrest because it doesn't *only* endorse the ICC - I'm not even sure what that means, the movie doesn't mention the names of any diagnostic criteria if I remember correctly. And the pwme in the movie are severely and very severely affected (bedbound, tubefed) and would obviously fulfill any criteria from Ramsay to the ICC.
These people should really direct their advocacy efforts to more productive areas - there are enough ME scandals out there that need to be exposed with facts and information.

On the topic of CFS and ME. I'm glad the movie doesn't only mention the term ME. I've lost everything to this disease in the last 15 years (work, friends, having kids or a partner, living independently, showering as often as I would like, being able to leaving the house) but my only official diagnosis is CFS. The team of Prof. Scheibenbogen at the Charite Berlin diagnosed me using the CCC and I would fit any criteria. Still I only have a CFS diagnosis (G93.3) - it's how the disease is called in Germany. That doesn't mean I'm less sick or less deserving. Of course I'm aware of Lake Tahoe and the birth of the name CFS and the political implications and I truly hate this name with all my heart - but it's still the diagnosis I have and I'm very grateful I'm not excluded from Unrest and the worldwide campaign because of that. The movie should bring us together and not divide us.

that link doesn't seem to work anymore(?)

@slysaint, the tweets were deleted.

Edited to add: (G93.3).

 

[anniekim]

Sorry to hear this. My official diagnosis is CFS but I meet Ramsey and ICC criteria. I view it I have M.E. The blanket statement CFS is not ME not helpful and misleading without qualifier many diagnosed with CFS will meet stricter ME criteria, but crucially not all. The issue is the harmful conflation when in late 80's CDC, then followed by other countries, conflated symptom fatigue with poorly understood neuroimmune illness M.E. This is important information for advocacy in my opinion as research since early 90's on widely mixed cohorts.

 

[Hajnalka]

The issue is the harmful conflation when in late 80's CDC, then followed by other countries, conflated symptom fatigue with poorly understood neuroimmune illness M.E. This is important information for advocacy in my opinion as research since early 90's on widely mixed cohorts.

I absolutely agree!

And just to make sure I'd like to clarify what I meant above when I said "people should direct their advocacy efforts to more productive areas" (what sounds misleading). I too think it's essential to expose the CFS-CDC-Lake Tahoe-mass-hysteria story and to advocate for strict diagnosis criteria and for meaningful cohorts within trials. I just meant that Unrest is really not a target to do that. It's a movie by someone who has ME (and was bedridden while making it) about other people with very severe ME: Jessica Taylor, Whitney, Karina Hansen. A list of names of fellow patients that where taken from us because of this disease is shown in the end. There's really no conflating happening with any ridiculous CFS "being tired for 4 months" diagnosis criteria.

This is one of the 1 star reviews on Amazon and I just don't get it:

This film is heartbreaking for anyone who has friend or family actually diagnosed with ME this film could be so damaging to community. How dare it lie so much about such a serious condition? No absolutely not. This is not a film about ME which absolutely is NOT CFS.

Would like to understand what would make a pwME write something like this but I've seen Unrest and just really can't wrap my head around these allegations.

 

[anniekim]

Thanks Joh for your reply. Sorry crashed and can't type more at mo.

 

[priya]

also representing the most severe with the least social supports in my review. Jen now calls herself "moderate", not "severe". 7000 characters.
imbd accepts 5,000 for a review in case anyone is wondering.

https://www.amazon.com/review/R3HBLKLSIGPKQH/ref=pe_1098610_137716200_cm_rv_eml_rv0_rv

 

[leela]

Oh my god, @priya , that review is a masterpiece, Thank you.
I've been thinking of you lately and wondered how and where you are; so glad to hear from you, and so articulate and passionate into the bargain

 

[priya]

Oh my god, @priya , that review is a masterpiece, Thank you.
I've been thinking of you lately and wondered how and where you are; so glad to hear from you, and so articulate and passionate into the bargain

thank you! oh Leela, how are you? these forums are hard for me + I know FB is harder you, but our OG is there and we do miss you. and ppl often wonder where you went. well I seem dippy atm, but my biggest news is:

1. I sat up in hospital bed, then eventually stood, then eventually took steps with a walker for the first time in 12 years starting a few months ago

2. I took myself outside for first time in 14 years -- only takes 3 steps, but still. I guess I went out about 20 times this summer.

3. I was homeless and thus hospitalized 1.5 years ago for 7 weeks, and they wanted me out obviously, so I'm living alone with (sometimes) care in a Toronto condo. which is probably an insane thing since my functioning is in-between that of jess' + Whitney's, but I had no other choice. this is very difficult.

love you sista

 

[Hajnalka]

Hi Joh,
I am not trying to justify the comments but, if you haven't already, I suggest you have a look at the Hummingbird Foundation http://www.hfme.org/ and it might help you at least partly understand.

Hi @slysaint, thanks for tagging me and for offering information - but I'm highly informed on this topic and know the Hummingbird Foundation and follow the discourse closely. Have read up on the history and politics surrounding this disease daily since my diagnosis. I just don't think that boycotting Unrest and the Unrest campaign will be of any help with these issues. What I meant with "I don't get it" and "I can't wrap my head around this" are allegations like "How dare it lie so much about such a serious condition?". Fail to see the "lie so much" parts in Unrest.
Would also be curious to know what the people who loudly "boycott" Unrest would suggest we do instead? Have they started their own campaign or made their own movie? Would they prefer that nothing happens and we're being ignored like for the last 60 years?

Of course I agree that the conflation of chronic fatigue with ME/CFS is at the heart of all our problems. And that the name CFS has prevented us from being taken seriously and prevented research and funding (and was partly created to do that) and is an insult.

I agree with Priya's review on the use of 'chronic fatigue' by a Dr(can't remember the name)

Yes, I was very annoyed too. And he's not the first specialist to conveniently use the term chronic fatigue in talks or documentaries and it baffles me every time.

At the moment ME and CFS are listed together by the WHO under G93.3. I have the diagnosis G93.3. Just because in Germany, the term CFS is used for G93.3, I'm not less sick. I've lost my 20ies and 30ies so far and even if a cure is found I'll never have a normal life because I missed everything that you do and build in these formative years. I'm fed up with hearing that CFS is a joke (especially from fellow patients). I don't think that someone who gets diagnosed by a GP in the UK with the NICE guidelines after being tired for 4 months and having one additional symptom is more sick just because the paperwork says G93.3 (ME) and not G93.3 (CFS). If it makes me somehow more real sick and deserving, one doctor called it ME but never managed to write the promised letter. It's just in part coincidence which term the doctor or country uses for G93.3. GPs in Germany often can't even print out ME as diagnosis because the computer system has filed the ICD-10 code G93.3 with the official German translation "chronic tiredness syndrome". The name is important but I think the content (diagnosis criteria) is more important.

In the discussions in the 1 star reviews people also write that 90% of pwme have no "real" ME and e.g. deny people without an infectious onset an ME diagnosis. They also think that G93.3 is ME and CFS is an R diagnosis, what is not true (at least not in all countries).

Sorry, @slysiant, my rant was not aimed at you. I know you were just offering an explanation and information. Having a bad (or rather worse) day. That people out there invest their energy to target Unrest that might be our biggest chance in 60 years for a worldwide advocacy campaign instead of targeting topics that are really damaging for us (that we have no shortage of) or doing other advocacy work is upsetting for me. I'm stuck in bed, living in a prison that is my old children's room and want things to change - and am convinced that the Time for Unrest campaign is already helping to create change.