Things are heating up in Canada!

Old Bones

Old Bones

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It seems the National ME/FM Action Network was misinformed regarding the "air" date of Jennifer Brea's interview.

Just learned it is on TODAY. Unfortunately, this means that except for those of us in Alberta and B.C., it has already finished. But, it will be available later online.

http://www.cbc.ca/radio/thecurrent

The website for The Current also shows Jen was interviewed by a guest host, Laura Lynch.
 
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perrier

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I heard the interview. I sent in a comment to the current thanking them profusely and raising other issues connected to this illness.

Once again I need to repeat the comment I made after Ms Brea spoke on Ted talks. She says slowly but surely year by year she is improving.

Obviously I'm thrilled for her, as this illness is hell. she's at the five year mark. But knowing several young people at the 10 and 15 yr mark, I can say it's a long term brutal struggle.

Someone who knows Ms Brea should address this point, for it sends a very incorrect message. The ignorant listener thinks, 'ah, they do at least improve. It's not like other horrid illnesses.' But this is wrong! Some people do not improve. SOme stay the same, some get worse. Some improve and then relapse, improve and relapse.
Also, the illness strikes at different intensity and severity.

This illness shows no mercy.

But at least the current did something. We should encourage them to do more programmes.
 
shannah

shannah

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1,429
perrier said:
I heard the interview. I sent in a comment to the current thanking them profusely and raising other issues connected to this illness.

Once again I need to repeat the comment I made after Ms Brea spoke on Ted talks. She says slowly but surely year by year she is improving.

Obviously I'm thrilled for her, as this illness is hell. she's at the five year mark. But knowing several young people at the 10 and 15 yr mark, I can say it's a long term brutal struggle.

Someone who knows Ms Brea should address this point, for it sends a very incorrect message. The ignorant listener thinks, 'ah, they do at least improve. It's not like other horrid illnesses.' But this is wrong! Some people do not improve. SOme stay the same, some get worse. Some improve and then relapse, improve and relapse.
Also, the illness strikes at different intensity and severity.

This illness shows no mercy.

But at least the current did something. We should encourage them to do more programmes.
Click to expand...


I think she clarified that she's having treatment that's effective.
 
helen1

helen1

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I heard the interview just now and thought Jen spoke very well.

I too thought she should have given more details about how the progression of the disease varies. Also I thought for a moment it sounded like she was saying she was improving because she never gives up which is a terrible impression to give. But I know she wouldn't have meant that.

I'd have liked her to have had a clearer answer about current research. I think of all the doctors and family members who were listening who need convincing this is a grave disease. Biological proof and current research explained more succinctly would have been great.

But I thought she did convey well the suffering and lives lost by ME. And the interviewer had seen Unrest so asked informed questions. Such a wonderful shock to hear ME discussed intelligently on CBC radio. Overall it was a good interview. Thank you Jen!!
 
shannah

shannah

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1,429
perrier said:
I would say there are symptom relief treatments that work or don't.
Click to expand...

I'm not referring to symptom relief.

At 1:30 mark she says she's getting better and better due to.... "and access to real treatment."

She's stated before that her improvement is due to effective treatment - antivirals. Oh, that we should all have the same access.
 
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Snowdrop

Snowdrop

Rebel without a biscuit
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I appreciate Jen Brea's efforts immensely. Her going out there and fighting the good fight.
I agree that whenever the subject is mentioned a prefacing remark such as "I've had access to medical treatment that has allowed me to improve over time although I am far from the well person I was" The italicised part being the preface.

But these things are a work in progress with a learning curve as to how best to respond and remembering to include.
 
Old Bones

Old Bones

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808
Andre Picard is The Globe and Mail's public health reporter. He has more than 59,000 Twitter followers, and wrote one of the most supportive articles in the mainstream Canadian media I'm aware of, here: http://www.theglobeandmail.com/opinion/time-to-take-chronic-fatigue-seriously/article23023462/

AndrePicard.JPG

Wouldn't it be wonderful if an updated article was published in The Globe and Mail, associated with the Canadian premiere of "Unrest" at Hot Docs this weekend? The treatment of ME patients in Canada ties in very well with with the message in his recent published work "Matters of Life and Death - Public Health Issues in Canada" -- that Canadians are too accepting of mediocre health care.
 
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Old Bones

Old Bones

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Messages
808
Here's the latest attempt by the National ME/FM Action Network to bring attention to the dismal prospects for Canadians with ME/CFS and FM -- a letter sent to the Acting President of the Canadian Institute of Health Research. The letter to Prime Minister Trudeau referred to is posted on page 3 of this thread.

It appears this letter was composed before Lydia was aware that no portion of her interview would be included in yesterday's segment of The Current. Or, perhaps the more hopeful interpretation is that it might be aired at a later date.

"Tuesday, April 25, 2017

LETTER to Dr. Roderick McInnes, Acting President, CIHR

Dear Dr. McInnes:

IMAGINE IF……

Dr. McInnes, our Network has followed your appointment as Acting President enthusiastically as the changes you have made in such a short measure of time will no doubt improve the quality and effectiveness of CIHR. We applaud you for your diligence.

On Thursday, April 6, 2017 the National ME/FM Action Network (Network) sent a letter to the Prime Minister, a copy of which is attached, for your information. In this letter, we advised Mr. Trudeau what it would be like if he came down with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome or Fibromyalgia (ME/CFS or FM) and what dismal prospects he would face in Canada to get diagnosed and treated. As of this date, we have not received a reply nor an acknowledgement.

CBC Radio contacted our Network requesting an interview with the writer and a taped interview was done on April 21, 2017. Among the questions asked by CBC Radio was whether we had heard from the Prime Minister’s office. Unfortunately, our response was in the negative. However, to be fair, we pointed out that he might not as yet be aware of our letter (the letter was emailed and sent by Canada Post).

This program will shortly be aired and once a date has been fixed for its airing, we will advise you. In the meantime, as Acting President of CIHR, you have an important role in research and we are therefore requesting you look into this matter so that we will be able to give a proper follow-up response to the media.

The National ME/FM Action Network respectfully request your urgent attention to this matter.

Sincerely,

NATIONAL ME/FM ACTION NETWORK
Lydia E. Neilson, MSM
CEO, Founder"
 
Kati

Kati

Patient in training
Messages
5,497
perrier said:
I would say there are symptom relief treatments that work or don't.
Click to expand...
If I may, I agree with @perrier, there are no 'treatments' out there, and even anti-virals, while being mainstream pharmaceutical drug is not a curing agent, it simply controls the virus replication and perhaps helps with inflammation (in the case of Valcyte) but they are no cure. I have yet to hear one person that will say they have been cured from Valtrex or Valcyte.

I cringe when I read people talking about nutritional changes as treatments, or supplements as treatment or pacing as treatment or even 'treating the adrenals' as treatment, because they are no treatments at all. They are at best self-management, and all of it except pacing is not evidence-based, tested in a controlled environment and published in a journal.

There are no treatment, period. We have yet to understand the pathophysiology, the subsets, and the root cause of this disease or these diseases. It's a sad state of affair. i truly hope that @JenB 's movie will be successful here in Canada.
 
Old Bones

Old Bones

Senior Member
Messages
808
meadowlark said:
The Toronto Star did a piece about Unrest in today's edition: https://www.thestar.com/life/2017/04/27/unrest-documents-a-little-understood-disease-hot-docs.html
Click to expand...

Not only did the article appear on-line yesterday, a "teaser" is prominently displayed at the top of the first page of the "Movie's & Life" section in today's print edition. The headlines read:

'There is no help for me'
Jennifer Brea's quest for answers about her health condition
is captured in the documentary Unrest

And inside:

Disease is not just in director's head
Filmmaker hopes to change
the way people perceive
chronic fatigue syndrome

The text is the same as on-line.

TorontoStar.JPG
 
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perrier

Senior Member
Messages
1,254
Old Bones said:
Not only did the article appear on-line yesterday, a "teaser" is prominently displayed at the top of the first page of the "Movie's & Life" section in today's print edition. The headlines read:

'There is no help for me'
Jennifer Brea's quest for answers about her health condition
is captured in the documentary Unrest

And inside:

Disease is not just in director's head
Filmmaker hopes to change
the way people perceive
chronic fatigue syndrome

The text is the same as on-line.

View attachment 20942
Click to expand...
As I've said a thousand times, the medical establishment does not see urgency here,as they did with AIDS
And yet this illness is as severe in other ways
Cutting down young people
 
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