Jen Brea talking to GMT news

[Ambrosia_angel]

The battery analogy is perfect for all the ignorants out there who don't know or care about ME. I wish people would stop nitpicking at her. Let's not forget that she is just human and doing this all by herself. Without any decent financial backing or support from a charity like other advocates often have.

 

[Skycloud]

She has a brilliant wide smile that distracts from signs of ME in her resting face. I hope she is able to rest sufficiently between obligations.

 

[Nielk]

The battery analogy is perfect for all the ignorants out there who don't know or care about ME. I wish people would stop nitpicking at her. Let's not forget that she is just human and doing this all by herself. Without any decent financial backing or support from a charity like other advocates often have.

She definitely has financial backing and a team of volunteers as well as people who have been hired for the Time for Unrest initiative.

Recently, she ran a crowdfunding campaign for this exact initiative - to educate and raise awareness - where she raised $140,000.

Most advocates in the ME community are volunteers with no financial backing.

 

[Wayne]

she's giving a good take away impression, that it's a serious disease. That's what people will remember and care about, not a list of possible symptoms.

I didn't particularly care for the battery analogy, but I don't think it took away from the main perception, or from the fact she came across as extremely credible. Her talking about not being able to lift her head off the pillow, and the clear shot of her in a wheelchair both seemed quite impactful to me as far as impressions are concerned. And in the end, it's almost always about "impressions". -- I thought the interviewer did a good job.

 

[JenB]

Someone posted on the Telegraph piece that nothing would change until I "came out" about the truth, which is that I am taking anti-retrovirals. I just want to nip any rumors in the bud.

I have never tried an anti-retroviral drug, so I have no idea whether it would have any effect on me. I am currently taking Valcyte and Valtrex (the former had a profound effect, the latter a minor one). These drugs did come out of HIV research as there was a great need to figure out how to prevent a variety of secondary conditions caused by "co-infections" that an HIV-compromised immune system cannot suppress. I also take Mestinon.

 

[Cheshire]

She definitely has financial backing and a team of volunteers as well as people who have been hired for the Time for Unrest initiative.

Recently, she ran a crowdfunding campaign for this exact initiative - to educate and raise awareness - where she raised $140,000.

Most advocates in the ME community are volunteers with no financial backing.

So what?
That financial backing is what is allowing Jen to do this fantastic job of raising awarness. Money well spent. (BTW nobody was forced to donate, and it doesn't prevent anyone else from doing so and trying to do the job as perfectly as Unrest is doing).

 

[A.B.]

The battery analogy is useful to help others make sense of patient's activity patterns.

Unrest appears to be a spectacular success everywhere.

 

[Nielk]

@Cheshire - My comment was in response to this-

Let's not forget that she is just human and doing this all by herself. Without any decent financial backing or support from a charity like other advocates often have.

 

[FTY]

Someone posted on the Telegraph piece that nothing would change until I "came out" about the truth, which is that I am taking anti-retrovirals. I just want to nip any rumors in the bud.

I have never tried an anti-retroviral drug, so I have no idea whether it would have any effect on me. I am currently taking Valcyte and Valtrex (the former had a profound effect, the latter a minor one). These drugs did come out of HIV research as there was a great need to figure out how to prevent a variety of secondary conditions caused by "co-infections" that an HIV-compromised immune system cannot suppress. I also take Mestinon.

@JenB you are doing SUCH an incredible job. The recent articles in UK press have been a huge boost to me, it makes such a difference to have a proper representation of ME in the media. Thank you so much!

I thought the telegraph article was great and the comments below were actually really good too. Thank you for sharing what is helping you here and I hope you continue to improve.

 

[TreePerson]

@JenB yes thank you so much. Knowing that MPs watched the film and then seeing them tweet about it afterwards actually brought tears to my eyes. It's impossible to describe what this means after so long of being ignored. I am deeply grateful.

 

[Mollymolly]

I have heard her mention Valtrex. Valtrex was used for AIDS as well.

She dint say Valtrex but she did say she is on antiviral med an Valtex is antiviral.

 

[Nielk]

She dint say Valtrex but she did say she is on antiviral med an Valtex is antiviral.

Brea posted yesterday on another thread here on PR-

Someone posted on the Telegraph piece that nothing would change until I "came out" about the truth, which is that I am taking anti-retrovirals. I just want to nip any rumors in the bud.

I have never tried an anti-retroviral drug, so I have no idea whether it would have any effect on me. I am currently taking Valcyte and Valtrex (the former had a profound effect, the latter a minor one). These drugs did come out of HIV research as there was a great need to figure out how to prevent a variety of secondary conditions caused by "co-infections" that an HIV-compromised immune system cannot suppress. I also take Mestinon.

http://forums.phoenixrising.me/inde...-talking-to-gmt-news.55636/page-2#post-928057

 

[Mollymolly]

Yes she did say Valtrex months ago so I am assuming she is still on it I got mine just now with 9 more refill so will be on it for at least 9 months...

 

[Learner1]

Maybe you are right @Nielk .

I understand it is a drug used for herpes infections.

Was HHV6A ever finally ruled out as a triggering co-infection for ME? I recall much was made of this alleged connection some years ago?

Many of us do have HHV6 and other chronic herpes infections, which Valcyte is quite helpful for.

The trouble is getting doctors to properly test for it AND to understand that lack of an IgM response while faced with very high IgG can mean a smoldering chronic infection.

Though some patients are truly mysterious, and some have autoimmunity originally caused by infections, others have these sbrsky infections their doctors gave my bothered to find or treat.

 

[Mollymolly]

Positive HHV -6 is considered as one of the indicators or a marker for diagnosis of ME/CFS, that is what my dr.sad

 

[Countrygirl]

This is the list of MPs who attended Jen's film at the HofC:

Adrian Bailey,
Alex Sobel,
Alex Chalk,
Alex Burghart,
Andrew Gwynne,
Carol Monaghan,
Chris Evans,
Christopher Ruane,
Christopher Chope,
David Simpson,
David Drew,
Derek Thomas,
Edward Davey,
Geoffrey Cox,
Glyn Davies,
Jeremy Quinn,
Jim Shannon,
Jim Cunningham,
Joanna Cherry,
Kerry McCarthy,
Liz Twist,
Mark Tami,
Michelle Gildernew,
Nicky Morgan,
Patrick Grady,
Paul Maskey,
Paula Sherriff,
Peter Bottomley,
Sarah Newton,
Stephen Timms
Sylvia Hermon,
Thangam Debbonaire,
Tony Lloyd,
Vince Cable

 

[Countrygirl]

http://blogs.bmj.com/bmj/2017/10/04/julian-sheather-unrest/

Here is an extract from the BMJ Opinion

Julian Sheather: Unrest
October 4, 2017

• The award-winning cinema documentaryUnrest explores the stories of people living with ME/Chronic Fatigue Syndrome. Ahead of its UK theatrical release on 20 October, Julian Sheather,Specialist Adviser, Ethics and Human Rights at the BMA, says the film raises important issues for the medical community.

What do we mean by illness? What is a disease? How do we really know that another human being is suffering? What is the difference between mental and physical pain? And if there is a difference, does it matter?

For most of us these are academic questions. For Jennifer Brea, they are the stuff of life. In her mid-twenties she was felled by a mysterious illness. About to marry, studying for her PhD at Harvard, and poised, just as her childhood self had instructed her, “to swallow the world,” she was laid low by a succession of viral infections. And then came near catatonia. She fell into a condition of agonized, almost mitochondrial, depletion. She slid away into a persistent, room-bound twilight. Light was painful. To move she had to haul herself, elbow by elbow across the floor. Her life got up and left her.

She ran the predictable gauntlet of specialists: bemused endocrinologists, rheumatologists, cardiologists and psychiatrists. There were investigations, hypotheses, bewilderments. Some said it was psychogenic, the late dark flower of an early trauma (recall that before brain scans multiple sclerosis was labelled psychogenic and dubbed hysterical paralysis.) Some said it was her immune system. Others that it was dehydration or the stress of study.

Then she turned to the internet. And found a virtual continent of fellow-sufferers. People hidden for decades, some permanently bedridden, some almost foetal with pain. Chronic Fatigue Syndrome, Myalgic Encephalomyelitis—call it what you will, here was a dispersed pandemic of unplumbed suffering.

Unrest is the film Jennifer Brea made about her condition. It is not an easy watch. She does not pull her punches. It takes us into the dark folds of a cruelly disabling condition. It is a defiant film though—not least because she makes it in dogged defiance of her condition. And it provokes ceaseless questions.

One that stayed with me is the long squabble between psychological and physical etiology. I get that to treat a condition it helps to know its cause. But what I don’t get is the insinuation—not from the filmmaker, but from some of the commentators—that if it is mental rather than physical, choice is involved. The phrase “it’s all in the mind” suggests that all we need do is change it. Change our mind and the problem dissolves. But such a view of mental phenomena is puerile. Our minds are not sovereign over themselves in these things. And the quicker we ditch that stale and exhausted canard the better.

Unrest also provokes philosophical questions about other minds. Because a devastating condition is not well-captured by current diagnostic possibilities, questions have arisen in the past about its reality. Is this suffering or elaborate malingering?

 

[perrier]

Someone posted on the Telegraph piece that nothing would change until I "came out" about the truth, which is that I am taking anti-retrovirals. I just want to nip any rumors in the bud.

I have never tried an anti-retroviral drug, so I have no idea whether it would have any effect on me. I am currently taking Valcyte and Valtrex (the former had a profound effect, the latter a minor one). These drugs did come out of HIV research as there was a great need to figure out how to prevent a variety of secondary conditions caused by "co-infections" that an HIV-compromised immune system cannot suppress. I also take Mestinon.

Dear Jen
It was a brilliant idea to film the agony of your days. The images capture the horror of this nightmare illness. I watch similar scenes at home as a family member of your generation suffers unbearably. Thank up for publicizing all this. I'm glad you are sometimes a touch better. Some folk are never better, as you know. We all want this young generation to get healed ASAP and to cease this unimaginable suffering. Speak out all you can, but watch your health too. Congratulations.

 

[bertiedog]

Many of us do have HHV6 and other chronic herpes infections, which Valcyte is quite helpful for.

Is this an expensive drug to buy privately in the UK if a doctor was to prescribe it?

I had 5 Herpes type viruses over the reference range when Breakspear organised a viral panel test. The only one that looked normal was EBV but it also indicated that I had had this in the past. Also very high response to Coxsackie but don't know which specific strain as it was't indicated as done through one of the labs in Germany linked to Armin.

I have never followed up on this but my immune system is quite compromised during the Autumn and Winter months. Things improve a lot for me from about May onwards. It happens every year so not sure this is consistent with these Herpes viruses being a problem for me still.

Pam

 

[2Cor.12:9]

Dear Jen
It was a brilliant idea to film the agony of your days. The images capture the horror of this nightmare illness..

@perrier @JenB

I wholeheartedly agree! I loved the film and thought it was absolutely brilliant of Jen to begin filming her experience before even knowing what was going on!

I've been sick for 31 yrs and my first few years were very similar to Jen's early videos. Like Omar, my husband has been amazing and supportive and this film was encouraging to HIM as well! I think it made him feel not so alone. Our caregivers need encouragement too! So I say thank you too Omar!

Since first becoming ill, I've experienced better seasons where I could travel by plane but then there are seasons of relapses (which I'm currently in now and partially bed-bound)

In the 1980's when I got sick there was no Internet, much less devices to easily record ourselves. I lived in a remote ranching area in the desert and my communication with other patients consisted of very expensive land line phone calls to a couple of people in the Incline Village outbreak. I also depended on the first editions of the newly formed CFIDS Association of America monthly journals. So in that regards we've come a long way!!

I'm sharing this film with health care workers in my area.