Saturday, 21 October 2017

My thoughts on UNREST (2017) ★ ★ ★ ★

*Update: Since the release of her film in 2017, Jennifer Brea has since been diagnosed with cervical cranial instability (CCI) and some other conditions - she had fusion surgery in late 2018, which has resulted, very happily for her, in a return  to full health. I think this could suggest that she was *perhaps* misdiagnosed with ME in first place, and may explain why it seemed, to me, at least, she was often 'inhabiting' the role of a person with ME. (NB. this is my opinion, I am not saying she did not have ME, I am stating my own feelings based on what I have observed from my careful viewing (I watched it twice) of UNREST and of also of JB's often confusing commentary on Twitter.) I - and I am certainly not alone - have noticed frequent inconsistencies and contradictions in her narrative. Jennifer's may well be a cautionary tale and could turn out to be instrumental in having discovered a new (albeit rare) differential diagnosis of ME. I certainly think the film is still valuable, the other severely affected patients' stories are compelling, but there must, in my opinion, be a caveat/update in any screenings, especially when the film is being used for continuing medical education (CME) in USA.

UNREST is a new film from USA about ME directed by thirty-five year old Jennifer Brea. The film has garnered much praise and documents Brea's own descent into ME (or CFS as it's interchangeably referred to in the film - this is not without problem as the toxic reframing of ME as CFS remains unexplored). Still, ME sufferers have been starved of representation (though we've also had VOICES FROM THE SHADOWS (2011) and FORGOTTEN PLAGUE (2015)) and it's unsurprising there's been such a buzz about the film. I'm passionate about education and I tried hard to watch UNREST as someone who knows nothing about ME, to see what it taught me. This was almost impossible to do (to put my own experience and knowledge to the side). UNREST is not just about illness, it's about how technology connected Brea to other 'shut in' people, invisible - housebound and bedbound with ME.  We are all networked, now, globally, if we choose to be. In a way, the theme is the obsolescence of the written word for communicating lived experience.

I found UNREST to be powerful in its illumination of ME - particularly through the inclusion of three very severely ill younger patients - and I found myself in tears frequently. But I also found the film lacked clarity in places. The politicisation of the illness is glossed over, as is previous advocacy, but it would be impossible to investigate the politics of ME in a 90 minute documentary - and this is very much Brea's own story (not a UK story where the horrors of PACE still abound). I think those more recently diagnosed, still grappling with the hell of it all, will find the film resonates hugely for them.

The film looks beautiful and, at times, has a dream-like quality: this reflects the sense of unreality that comes in the early stages of this illness, the sense that it can't actually be possible to be so alarmingly ill without any recognised treatment path. I loved the lighting, the shadows, the focusing on objects, like blue jars on a window sill with snow falling behind, to mark the passing of time. When writing about chronic illness there is little sense of plot, nothing changes, so you have to amplify small moments. A ceiling fan, a ladybird, a pair of high heels - unworn shoes are an important #millionsmissing campaign symbol - objects that take on immense meaning when you may be staring at them for hours on end, too ill to do anything else.

Having been ill since 1982 - and gone through my own hell as an eighteen year old -  I'm naturally a little jaded, but it was impossible not to cry at the extreme circumstances of Jessica Taylor-Bearman (UK), Karina Hansen (Denmark) and Whitney Dafoe (USA). I already knew a little about all of them. The image of poor twenty-seven year old Karina sitting on her bed, back home with her parents after being forcibly institutionalised for three years, will haunt me for a long time. The expression on her face is something that is hard to see (or unsee). Danish psychiatrist Per Fink is the villain in this piece and I couldn't help but have the very personal memory of my dear late Danish stepfather who supported me unfailingly throughout my illness. Twenty-six year old Jessica has been ill since she was fourteen and was in hospital for four years. She has severe osteoporosis as a result of being bedridden for so long. She has champagne held to her lips by her dad and counts back to the birthdays she has spent in bed (I thought of my own twenty-first in bed in 1984, which I fictionalised almost twenty-five years later, Helen Fleet, bedbound, feels like ‘a clown, a grotesque invalid wearing bright red lipstick and titanium earrings’). And Whitney, the son of Stanford professor Ron Davis, is unremittingly and severely ill, inhabiting a dark and hellish place - he  cannot even speak.

Brea decided to film herself to document what was happening, as doctors were not taking her symptoms seriously. She goes through what is familiar to many of us, trailing from specialist to specialist until we find someone with the expertise and knowledge to identify what is actually wrong (those more recently diagnosed or new to the illness may find Brea's own story more immersive than someone like myself, ill for decades). Seven years ago, she had a high fever, she  appeared to recover, but still never felt quite well. She would drag herself to classes. She  got infection after infection and would experience suddenly not being able to pick up a glass of water or sign her name on a cheque. On bike rides, instead of being able to do twelve miles, as before, she could only do six (this is not in the film but I've seen mentioned in a recent Times interview). After no joy with other doctors, she is eventually diagnosed with conversion disorder by a neurologist and walks home from the appointment to see if it is all in her head, as she has been told. She narrates that she collapses when she gets home and is in bed for most of the next two years.

She discovers others with similar symptoms online and wonders if she too might have ME (this, of course, is the Wesselyian fantasy, ME sufferers diagnosing themselves on the Internet. In Professor Wessely's world, patients are discouraged from educating themselves in case they discover that they are actually physically ill). Brea learns much about the illness through social media. This would have been the stuff of science fiction in the eighties. I'd never heard of ME. I remember looking up Coxsackie in the university library and the heavy book burning my arms. It is hard now to convey the paucity of information thirty years ago.  Brea consults New York's ME specialist Dr Enlander  - though he is not named in the film - and is prescribed Valcyte - an antiviral drug - which leads to her improving in two days and being able to walk again. This seems almost miraculous and it frustrated me that there was no discussion about Valcyte - what it is, what it does - some viewers may have wondered why we are not all taking Valcyte. It is an off-label treatment, which has not helped everyone who has tried it - and indeed can make some feel worse. And is not easily available to most (NICE guidelines in UK do not recommend antivirals,  unsurprisingly, as 'CFS' clinics prefer to treat ME sufferers with wholly inappropriate graded exercise and CBT. These guidelines are now, thankfully, under review, not before time).

Brea acknowledges that she was lucky to have access to a specialist. I felt, though, I wanted to know more about her actual diagnosis. We see her having lots of blood taken, I wanted to know what the tests were for. Being diagnosed is such a significant moment for those of us who have struggled to be believed: I went through the hell of Coxsackie B4 virus, undiagnosed for nine months, which then 'evolved' monstrously into ME. The Coxsackie diagnosis was a key moment - crucial to my getting a referral to neurologist Prof Behan, who worked closely with Dr Melvin Ramsay - all those years ago. My GP could no longer say I was imagining tremors in my muscles.

The film did make me think about how different a diagnosis is now than in the eighties. I was horrified in 1984 that I might stay ill for another five years (that was the advice back then - that it might 'burn itself out' in five years). I did not know how I would be able to stand the physical hell of ME for that long. I'm glad I had no idea of the true prognosis. Now, of course, those with an ME diagnosis know that that they might stay ill for decades. Brea speaks tearfully in the film of the grief and loss that the illness brings, she reflects candidly that she is doing 'a good job' by not killing herself.  I was struck by the scene where via Skype,  Jennifer asks Jessica, who is lying down flat in bed, almost ethereal, being filmed from  above: How did  you stay sane?

I remember too crying a lot at the beginning of my illness. I felt so ill, completely poisoned. It was terrifying ('How can you feel so ill and not be dying?' as my character Helen Fleet says). I'm sure I articulated my grief too back then but I can't now remember. I think it took me a decade to truly adjust to the illness. I missed my academic self. I wanted to know more about how Brea felt having to give up her PhD. She never refers to it after her diagnosis. Decades on, I still feel a kind of grief that I had to abandon my year studying in France in 1982/3 - and that I was unable to complete my French and English Honours degree.

I was conscious, though, while watching the film that it is a constructed piece of art, an artifice, like any narrative, and a couple of Brea's own scenes felt slightly 'theatrical', at least, to me. I don't mean acted, rather enacted. For me, this detracted from authenticity. It felt, at times, that she was re-enacting what she had experienced rather than experiencing it in that moment. I imagined numerous 'takes' to capture the reality of the illness. I compared it in my head to writing a scene, which you polish and polish until it's perfect (I could be totally wrong, of course, these are only my thoughts). Also, I was interested that much remains unsaid in the film. For example, Brea is not seen having to cope with the very damaging disbelief from family or friends, as many of us have done at some point in our illness (of course, she may well have done, we don't know, we only know what she reports). We see her interacting only with her husband, Omar, who is noble and loving and patient. He only loses his cool - understandably - when Brea attempts extreme mould avoidance as a treatment for her illness. Earlier in the film, when Brea has had an acute episode after over-exertion at a Princeton reunion, Omar - in tears himself - makes an observation that resonated for me: other people's pity is hard to bear.

Brea makes a crucial point when she says that one of the reasons the illness is not always believed is because we are hidden so much of the time. We spend so much time indoors recovering from small exertions. No one sees us at our worst. Some sufferers, tragically, cannot move from bed at all and are totally dependent on others for care. And there are a minority of ME sufferers whose illness is actually progressive. There is a brief but good description from Dr Nancy Klimas on mitochondrial dysfunction and the problems with aerobic exercise that ME sufferers have.

As I understand it, these days, Brea uses a power wheelchair when she is outdoors, but has now improved sufficiently to be able to promote her film in the USA and other countries (Brea also says she has POTS, though this is not referenced in the film. I think she should have mentioned this, as POTS and ME often 'overlap'). Improvement is always to be celebrated in ME, it's wonderful when it happens, though her current schedule seems impossible to sustain for someone with ME, certainly, the illness I know as ME.

Then again, I don't know anyone who is taking Valcyte. I guess it allows for a much greater level of functioning in some. While I have slight concerns that Brea is somewhat unrepresentative of many with ME, I, of course, recognise that we all can and do have different staminas and symptoms - and  symptoms do fluctuate. I also know that because of the lack of belief we've faced, we can be fiercely wedded to our own experience of the illness. And the rhetoric of 'oh, how can she do that?' can be extremely harmful (we've all faced it, I'm sure). But all of us - with true ME - share the cardinal symptom of post-exertional malaise (PEM). We are defined by exertion-intolerance: fatigability not fatigue. And in between times we are always invisible, always 'recovering' from an escalation of symptoms. The differences, though, between mild, moderate, severe and very severe ME are night and day.

There are small moments that perhaps only someone with ME will see. In one scene, a young woman Casie - whose mother, the quite fabulous Leeray, also has ME - says her arms are getting tired, when holding up her iPad to show photos. A small moment, but instantly recognisable - and important to portray. The last few minutes of the film focus on the #millionsmissing campaign, a campaign conceived by Stacy Hodges. Those empty shoes are such a potent symbol: most of us put our shoes on to go out into the world every day. Those of us with ME often can't and don't. There are ME sufferers who have not had to buy new shoes for years. There are ME sufferers who have killed themselves because they cannot stand it any more. There are also ME sufferers who have died of the consequences of extremely severe ME.

The film ends with beautifully stirring music - the score is by Bear McCreary - and Brea telling us that while the illness has destroyed her life and she wishes every day that she were well again, that she has embraced a different, new life. She expresses gratitude for the lessons the illness has taught her. To be honest, I found this hard to understand - and  a little saccharine. I could never be grateful for the catastrophe of my illness, but you just can't compare seven years with thirty-five, our landscapes are entirely different. Though, I can also say I have never at any stage of my illness felt 'grateful'. The illness has been much too harsh, physically. And I have lost too much. The enforced 'stillness' of the illness has given me a useful perspective as writer but I would swap that in a second for never having had ME in first place.

Perhaps, though, Brea's optimism is part of the narrative arc, a conscious 'happy' ending to such a bleak tale. And perhaps, importantly, her own ending - and significant improvement (thanks to medication) - also gives hope to younger and/or newer sufferers. The film is an exhausting watch. Before the credits, we see the names rolling of some of those who have died as a result of having ME (I think they had taken their own lives). I sat silent for a few minutes, after the film ended, I couldn't speak (and I imagine seeing this in the cinema would enhance the  emotion I felt, I watched on laptop, was sent a link by UNREST UK team).

I'd like doctors and politicians - and anyone who is cynical about the illness - to see UNREST.  I'm glad it's being shown in medical schools. But I'd also have liked to have seen more of the science that we do know - and I fear that the lack of political context may prevent the film having as much impact as it could. The medical and political scandal of what has happened to ME sufferers is never fully articulated. I wish, for example, footage of Stanford's Professor Montoya apologising to sufferers for the way the medical profession has treated them had been included.

In the UK, ME is synonymous with the hijacking and reframing of the illness as 'chronic fatigue' in the 1990s by  Simon Wessely and colleagues -  the ascent of UK psychiatrists cannot be ignored, nor the toxic influence they have had worldwide on the perception of ME, with their relentless and ruthless promotion of the biopsychosocial model - and wilful conflation of criteria of ME and CFS. While the film packs a huge emotional punch, I'm not sure how much it will punch politically in the UK. The biopsychosocial narrative is so embedded, it will take a juggernaut to shift it. Hannah McGill and Leslie Felperin, both respected film reviewers, still referred ignorantly to the physical v psychological debate as if the robust science of physiological abnormalities simply doesn't exist (though the Guardian has historically been dreadful with ME coverage). Mark Kermode gave a lovely review, though he was already empathetic.

We need journalists and doctors - and everyone else - to come out of UNREST enraged at what ME sufferers have endured, and unequivocal that ME is a physical illness - it is not enough that they feel greatly moved by the plight of very sick people.  Still, the film is giving the illness a much needed, greater visibility - and kudos to the UNREST team for pulling this off. I very much hope this visibility can translate to more research funding, which is what we need above all.  I dislike starring systems - they lack nuance and subtlety - but having given my response in great detail above, I happily give UNREST four out of five stars as an art work about ME.

*Just to add that UNREST was funded through Kickstarter and it's a testament to the generosity and hope of ME sufferers and their families - and their faith in the process - that UNREST has had the media coverage/distribution/success it has.


molive said...

Great piece Nasim, thorough and insightful.

nmj said...

Thanks. I am obviously very interested in portrayals of ME, and also responses to those portrayals! I have tried to be fair about what I see as the positives and the negatives in the film. I did not intend such a forensic examination but when writing about ME, it is hard to keep it short.

M. said...

The biggest problem with Valcyte is the extreme price. I would have been able to get a prescription, but it would have cost me 4,000 euros a month. A ridiculous price tag - and this in a country with "socialized medicine". I know two people who did pay that price, taking loans, using up their parents' pension savings, selling their car etc. Unfortunately they did not have as much improvement, but one of them could have died without it.

This is one of the problems with the film. Even though it displays non-Western perspectives, it's very upper-class. Jen is unable to do much and Omar is regularly seen at her side (though he probably works, too), yet they have a beautiful house, she is able to try Valcyte and other expensive treatments. Of course, that's her perspective. If she was living alone in a trailer, she wouldn't have been able to make that film.

FWIW, I've been sick for 17 years and I have finally reached a level of gratitude and acceptance I didn't have before. I'm not grateful for being sick, I'm grateful for still having some things in my life, even if most people would say I have nothing in my life (and I am grateful for having met my best friends due to this illness, even if I'm almost never able to see them or even communicate with them). But I've managed to get that nothing to feel like everything. I'm happier than I've ever been while I'm sicker than I've ever been. It sounds absurd, it would have sounded absurd to me not too long ago.


Spwells said...

A very interesting article. I was retired from work with a presumed "diagnosis" of ME after carrying on a relentless schedule one week when I had a "flu" bug, after which I collapsed with all the usual symptoms. I received no treatment and when I tried to get on a study an Osteopath was doing into possible treatments for M.E. my G.P. wouldn't sign a referral as he couldn't be sure what I was suffering from! I was active for a time on a U.K. Newsgroup, but withdrew after a while and plotted my own slow road back to reasonable health. Indeed after 10 years I felt I had got my life back, then bowel cancer struck! Until there is some positive test for the disease diagnosis will always be subjective and of course like all diseases there will then be variations in its severity and responsiveness to treatment. I will look out for the film. Oh yes and I have also been diagnosed with POTS.

Tamsin Chennell said...

I agree with a lot of what you said. I will never be grateful for this illness - but I wonder if Jennifer was just trying to find hope/gratitude in a desperate situation. I've almost done it and then caught myself and thought I bloody am NOT grateful, I hate this illness but it has taught me something. Not something I ever really wanted to learn but hey . . . it happened. I cried a lot during the film too - it hit hard at times, I could see when she was about to crash before it happened on the screen, I too have explored the snake oil treatments. What hit me hardest though was seeing the Dr Kilmer in 1984 discovered the bio markers, found out what was wrong and we are STILL exploring this. We are STILL persecuted by Per Fink, Wessely, Crawley et al. I tried to wish myself better, to do more and that's why I am now on the edge of that 25% rather than 'just' moderate. 'Do no harm' doesn't seem to matter to these people. I really hope this film wakes some people up. I believe it is being shown in Parliament - let's hope at least a few MPs watch it.

nmj said...

Thanks for above comments, my head has kind of shut down after writing the article, I have bad PEM from 'sustained' writing of last week. But have just edited the blog v slightly.

1) Re. gratitude, I have added to that paragraph: 'The 'stillness' of the illness has given me a useful perspective as writer but I would swap that in a second for never having had ME in first place'.

2) Have also linked in the same paragraph to a recent comments thread on Jennie Spotila's excellent review of the film, where potential issues with gratitude were discussed.

I will read responses in detail later, just can't absorb at moment, but keep the responses coming, is interesting to discuss. Thank you.

French femme said...

Thank you Nasim for an excellent review of the film Unrest. You express so very well how I feel but am too unwell to do so at the moment.

Karen Gormley said...

I get what you're saying about how middle class she is, and thus fortunate to be able to try different means of recovery. But on the other hand I'm glad because so many people think sufferers claim to have ME as an excuse for lack of ambition, stupididy, laziness and a desire to live off the state. At least it clearly represents people who are highly intelligent, ambitious and desperate not to be ill. I think a poor person would immediately (and of course, wrongly) be judged by people who don't know about ME as just another no-hoping skiver.

Karen Robins said...

I wish there was also representation of the financial injustice of the disease. The strain of which fractures family life. No treatments offered and yet we live in this horrific nightmare knowing there are drugs which could help. The abuse both from the medical community, employers, family and friends was also very thin in the film. The verbal fights endured leaving you sicker and more isolated than before. The pain and loneliness can be overwhelming. Nasim You have written a wonderful articulate & fair review. Having also watched the movie your review is most accurate. Beautifully immotive and creative for the viewers, just wished the history and known science was included too.

Terri W said...

#MillionsMissing was conceived by Stacy Hodges not Jennifer Brea. Stacy is a woman living with ME from North Carolina. She approached #MEAction for support regarding her idea to protest Health and Human Services in the United States.

Susan said...

I'm so glad to see I'm not alone in seeing the issues with the film. Thank you for saying it all. I definitely felt that, there are things only fellow sufferers cd understand and at the same time it manages to show how bad it can be. Too many unfinished thoughts, one question a lot of ppl have asked is what exactly it was that made her better bc it's not clear. She says about the antivirals only helping temporarily, doesn't say what antivirals or how often she takes them or what happens when they stop working. Yes she deteriorates again but is it worse than before she took them or not as bad, that wd make a huge difference in whether or not I wd risk asking my GP for something like that. I've had experience of things that have improved but the payback after is much much worse than makes it worthwhile. As you say she seems to be alone with her very understanding husband and no family pressures which is not the experience of most ppl I know. I don't remember any mention either of the fact that she didn't have kids, did she want them and how she felt about clearly not being well enough to have them. Having a child who then turned out to have an autistic disorder and a husband who wasn't emotionally supportive completely destroyed what little life I had and the film doesn't address the family or lack of it. Most of all as you say it's a worry to me that she so lightly accepts the inclusion of CFS as the same thing. I had a doctor tell me recently that they now call it CFS as an all encompassing term which includes ME as an immune deficiency based disease. There's so much wrong with that I just don't have the words...I do believe the film wd help but from a thirty year plus sufferer who has seen the public response change so much and so often, like you I have my reservations.

nmj said...

Thanks for comments, sorry can't reply individually. Whatever the 'negatives' of the film, I think the platform it has given the illness is to be applauded. I just hope that those politicians and medics who manage to see the film will harness their emotional responses to make actual meaningful change in terms of research and therapies and the de-psychologisation of ME.

The film was shown in Parliament the other day , or at least the first 30 mins, followed by discussion. I hope it is also screened in the Scottish Parliament, that is a Q& A panel I would like to be on, if possible.

chestnutkay said...

Another excellent blog, Nasim.

I haven't seen the film yet so have no thoughts on it myself - I'm not sure if my tear ducts will get me through it as it's so close to the bone - but I wanted to commend you on such a well-balanced piece.

Like you, I have been an M.E. patient for over 30 years, since the age of 12, and that experience brings with it a very important perspective, so I was particular interested in your views. The relentlessness of being in this situation for decades of your life, with none of the care which other chronic illness patients rightly receive, is hard to articulate. Suffering through decades of intentional neglect and re-writing of history by those who need M.E. to be shutdown is horrendous and heartbreaking. Such a duration brings with it new phases of loss, grief, ignorance, attacks, war-wounded exhaustion, daring to keep the hope alive. It's brutal. You've written a brilliantly balanced review, highlighting the good and not shying away from aspects that your level of experience has flagged-up. It's an extremely important angle to be heard. The clarity and fairness of your piece is really impressive and no mean feat with an M.E. brain. We understand the work that must have gone into it.

I hope I do watch the film as it's probably as important for me to see a validation of my reality as it is for the film to educate those who need educating. It's incredible to see the effect the film has already had on awareness and conversation. My hope is flickering a little stronger once more as a result.

A brilliant blog Nasim, thank you for writing it. Kay x

nmj said...

Thanks, Kay, it took me a week to write and was exhausting, but since the film has been getting so much media attention, I felt it important to articulate my views as someone in UK with Ramsay-defined ME, diagnosed early/mid 80s, pre-Wessely. I am so sorry you have been ill since you were 12 years old. I think you will certainly find the film a cathartic if emotional watch. I have never seen the illness get so much positive media coverage and UNREST has harnessed something unstoppable, I hope!

Crafty Green Poet said...

Excellent and very thorough review. Thanks for writing it.

nmj said...

There is an interesting two-part review of UNREST - long, but very worth reading, by Peggy Munson.

I took part in an UNREST event at Scottish Parliament end of January - I blogged here.


Increasingly, I do feel that Jennifer should have revealed more about her other diagnoses in the film. She has tweeted recently that the scene in which she has to crawl upstairs was caused by eating a pint of strawberries. She describes transitory neurological symptoms due to MCAS.

She also says she leads a pretty good quality of life on Mestinon, anti-virals and avoiding MCAS triggers. This obviously was not all covered in film. I recall anti-virals but no discussion of Mestinon or avoiding certain foods.

Her 'inconsistency' outside of the film confuses me. I have also noticed that she will tweet that she is *bedridden* when she is compelled to rest in bed for days at a time. This is not bedridden, but essential and crucial bed rest. I often have to rest in bed but am not bedridden.

It is not, in my opinion, helpful to describe oneself as bedridden when in bed for a few days, when there are other extremely ill ME sufferers who actually remain bedridden - hardly able/completely unable to leave bed ever - and entirely dependent on others for care. She also says she can work without 'crashing'- her words were it was 'safer to be a workaholic' - and only crashes doing joyful things, when she loses herself in the moment. This, of course, is anathema to most people with ME, who crash regardless. I did query her comment, but got no response.

Susan said...

I'm sure she wd say there's only so much you can put in an hour and a half but I totally agree, making things sound worse than they in fact are is entirely UNhelpful. Having said that, to her given her level of activity before this severely reduced level of activity may well feel as bad as if she was entirely bedridden so she simply chose to portray it as such to get the point across to healthy ppl? We all know the concrete block feeling like you cdn't move if your life depended on it and that is substantially worse than her opting to stay in bed rather than pushing herself. I thought that when she moved out to the garden tent, even that wd be too far for me to go on most days at the moment, let alone being able to live out there no matter how warm it was lol. I certainly agree her version of crashes is not mine.

I find that disturbing, that she wd equate an allergy or at the very least an intolerance to strawberries is not necessarily anything to do with ME is it? I suppose that wd depend on whether she had ever had a reaction like that prior to the ME symptoms. However, I recently had an incident where I went out for dinner and promptly threw the whole lot up as soon as I got home. I don't believe it was actually the food, merely the stress and effort of four hours sat in an upright chair and trying to be social for once! Tbf Jen may well be saying her body responded in a similar way to the strawberries or the event at which she had the strawberries therefore, though it may have been what she ate that caused the relapse, if she didn't have ME that response wd not have happened which might be why she didn't mention it? I truly want to believe these were not deliberate omissions or lies as such but it wd be nice if she answered your queries.

nmj said...

Hello, Susan, Thanks for commenting. Please note I didn't ever suggest deliberate omissions or lies, if you read my previous comment. I am more concerned about lack of clarity, careless use of language and of conflating ME with MCAS. I note that Jen B is also v engaged in embracing invisible illness in general, which while laudable, is maybe not the best route for an ME campaigner.

Susan said...

Sorry I wasn't suggesting you were saying it was deliberate, I just felt that maybe she might have felt it was confusing to start including everything else? I agree, other conditions shd have been mentioned bc some of the symptoms might be attributable to that not the ME. But then how many of us actually only have ME and not other conditions as well?

nmj said...

Sadly, I increasingly find J Brea to be an unreliable narrator for someone who purports to be advocating for pwME. She has on her profile ‘ME, POTS, MCAS, and IIH'. She says she's having surgery soon for a problem that has taken 7 years to diagnose. I don’t know what the problem is but she says it's rarely dxd but ‘frequently complication of hEDS, & more people w ME/CFS also getting diagnosed’. She frequently overstates the connection between ME &MCAS &EDS. It concerns me that she tweets with a medical authority she simply doesn't have, making sweeping generalisations about patients 'she sees' (I guess she means patients she is in touch with).

She recently started #nightingales for people w diverse illnesses. We've fought long and hard for clarity around myalgic encephalomyelitis, and she is frankly muddying the waters. She has spoken of having had thyroid surgery, which has led to new symptoms. She says ‘underlying, subclinical issues were likely exacerbated by anesthesia/intubation during a recent surgery’. She says she stops breathing when she lies on her back and is tasting spinal fluid in her mouth.

In her public Twitter profile @jenkicksME - before UNREST fully funded/released – as well as ME sufferer, she described herself as ‘ex-bipolar, sugar phobic, #cancer'. Her thyroid cancer & former bipolar 'status' were not mentioned in film, which is absolutely Brea’s prerogative. Perhaps editorial choice too, so as not too ‘muddy’ the ME story.

She told me good while back the bipolar dx may have been a misdiagnosis (in her tweets she attributed bp illness to gluten intolerance). I suggested she delete this profile along w her bipolar-related tweets (she'd engaged, for example, w Stephen Fry) as it would be difficult area to navigate when she is trying to 'de-psychologise' ME. She was grateful for my suggestion.

I found it odd though she would have forgotten about her old profile. I don't personally think having ex-bipolar on one's Twitter profile is a subtle detail, easily forgotten. I think this why I sometimes find her to be an unreliable narrator, certainly in her rhetoric outside of the film. I find her narrative confusing.

This summer she changed her Twitter name to ‘Jennifer atypical poliomyelitis Brea’ & posted a photo of herself having a spinal tap as if they were somehow connected. Yes, ME was described as atypical polio in 1950s, but I felt her actions were not helpful & melodramatic, unnecessary. Polio was eradicated a long time ago, and those of us with a diagnosis of ME nowadays clearly do not have atypical polio.

I think what I found most reckless was when she joined in a conversation about quality of life/end of life when poor young British child Alfie was dominant in media - Alfie died earlier this year from a neurodegenerative condition when his ventilator was switched off. Jennifer waded in to say she’d had ‘transient states mimicking severe brain damage’ & she could ‘profoundly feel the presence/absence of love and would 10000% want to live that way for the rest of her natural life if that and death were her option’. I found her inserting herself into a conversation about a brain dead child and making it about her thoroughly distasteful. (She also contradicts herself as she has said previously she would have taken her own life had she not got access to Valcyte/ME medications.)

Brea also – rather bizarrely – sent Michael Sharpe a volley of tweets few months ago suggesting he could play a major positive role in future of ME if only he chose to by reading and educating himself. She appears I'm afraid at times to be all over the place. She embraces activism for various different illnesses, &is clearly passionate about these different issues, but she seems increasingly unrepresentative of those ME patients who have ME as primary diagnosis. I'm also aware that ME advocates in USA are unhappy about MEACTNET’s – which Jennifer founded - position on SEID. There is concern re. true ME being diluted.

nmj said...

I see that Jen B has now just posted on her new diagnosis of 'craniocervical and atlantoaxial instability'. She also wishes to clarify that she still has ME - she has had *six* diagnoses over the years - and hopes that everyone will still support her if by some miracle the surgery cures her ME. (I do feel six diagnoses in six years is a lot. Most of us feel fortunate when we get one definitive/robust diagnosis of ME.)

Still, she is more measured in this long piece than she has been on Twitter, where she has often overstated overlaps wth ME and EDS, and diluted the essence of classic ME. To those of us who are 'happy with one diagnosis of ME' as our main diagnosis, she says 'all power to us'. She says: 'I hope we can move to a place where, like people with EDS, we can say, “I have ME, it’s my “core” condition, and I also have….” or “and that has given rise to…”...

I wish her well with her surgery and am also glad to see that she is clear that her post-thyroidectomy symptoms are not representative of ME patients generally.