Canadian Federal Health Minister to make announcement regarding ME, August 22

To add, I'm personally not a fan of the term brain fog or 'mental fogginess', I don't think it's a good description of what is occuring. I don't feel foggy, I feel brain sick.

 

Aside from certain memory effects, like "word finding," it's hard for me to disentangle "brain fog" from the effects of "dizziness." The dizziness seems to put me at a sort of "remove" from what I'm seeing. I suspect this is due to a failure of the eyes to converge properly, leading to the partial suppression of the view from one or the other eye - which is not the same as "double-vision." This creates a sort of "third person view*," which I believe I've seen some people refer to as "seeing the world as if from inside a glass helmet." Although I might call this a "fog," I'm not sure if it's what others mean by "brain fog."

[*The "third person view" might also be the result of having to actively "concentrate" to overcome the visual effects of dizziness. You don't passively "experience" what you're seeing, you have to "work" to interpret it. Of course, maybe I'm alone in this and it's just my experience of what is going on.]

 

@Forbin do your symptoms occur during PEM or all the time?

 

My dizziness seems to be unrelated to PEM. It was at it's worst in the first 4-5 years following onset and then gradually (and I mean gradually) has improved improved since then.

 

What I find confusing is it’s a pretty small sum but there’s a lot of fanfare. I asked in Canada Facebook me action and they said it was just for one researcher and seen as the start which is fair enough but why then was there a press release etc? Canada invests around half of uk in dementia around $41m dollars per year so that’s fitting with it being half our size in population but it still is giving massive funds to other conditions...

I feel a bit like we as a community are like tramps and everyone ignores us in the roadside, then someone rich has sat down beside us and tells us they really care & want to help and takes out a fat wallet and gives us £1. Sure that will buy a meal for that day but it does t match the rhetoric and fan fare?. Obviously uk is currently even worse giving nothing recently and when we got the £1.6m 2012 few of us envisioned that would be nearly it for the decade. But if people in Canada are saying the $41m is holding back the dementia research effort as it’s too low, I think that people With ME can query €280 000.

 

Unfortunately we are not allowed to use that word. Because reasons.

Shaka, when the walls fell

 

The real test will be in whether Moreau gets his research proposal funded. It was rejected a few years ago based on the opinion that ME is not a real disease. The minister of health made a clear statement, along with a CIHR scientific director, that this is clearly not the case. This cannot be used as an excuse anymore.

So we'll see. This is a foot in the door and it is tiny scraps, but perception matters. The "ME, formally known as CFS" is no small thing either. There are many people who aggressively do everything they can to obstruct anything related to us, it's an obsession. It's completely abnormal and frankly absurd but it is very rare for politicians to overrule medical professionals and tell them they're not doing their job properly. And it's happening in several countries independently so the tipping point is getting closer.

Everything about this disease is maximum crap, the failure is total, systemic and, frankly, stupid. But human nature is weird, self-interest above all, even in medicine. It's the same reason we vaporized lead in the atmosphere for decades and why nothing significant is being done about climate change. Millions of lives are being sacrificed for the pipe dreams of mediocre people obsessed with a magical belief system who built their career on brain farts. Human nature and history in a nutshell.

 

@rvallee have u any idea when we will know if Alain Moreau's research proposal has been granted funding?

 

I haven't seen any details yet. I'm just assuming there will be a resubmission of his current RNA study, which has so far been privately funded.

Not much point to a national research network if it doesn't lead to research being funded. Not that the normal rules of, uh, normality, seem to apply to us anyway... We did just have an "accelerating research" conference where the NIH director spoke and nothing was accelerated so bizarre and insulting are pretty much the norm for us. So who knows?

 

The press release and special announcement were also an opportunity to give voice to ME patients on national media, for the Health Minister to acknowledge we've been ignored and harmed thereby validating ME patients, for the Scientific Director to tell his physician colleagues to stop adding insult to this injury, and for Dr Moreau to proclaim ME at the biggest medical enigma in the 21st century (paraphrasing).

We wanted to leverage as much as possible out of the 'funding announcement', gaining sound bytes and media clips we can use in the future for advocacy.

 

Thanks @ScottTriGuy for your explanation.

I agree - aside from the small amount of funds, which was a message in itself - albeit, perhaps a research network can be set up with $1.4 million:

- changing the name back to ME from the very stigmatizing term "cfs" was a huge step - one that hasn't been done anywhere else yet

- for Dr. Kahn to say to physicians take the insult out of the injury was hugely important as well

- to have a respected scientist, at a leading Canadian university talk about this illness and its reality


This has all gained awareness for this disease that is worth much more than $1.4 million.

And, yes, these sound bytes can be used in the future for advocacy; also worth a great deal.

We have waited decades for a Health Minister to proclaim ME as a devastating, biomedical disease - this was huge!




However.....wouldn't it be wonderful to say - that's it! We're in! But, there is still a lot of work to do.

It would have been great to see more media coverage....


I know this is under the advocacy heading, but anyone able can of course forward the press release etc. to the powers that be.

 

Thanks, real thanks, are due to all those here (and elsewhere) who worked so hard, so tirelessly, so passionately, to get the govt of Canada to move on this. The day of or the next day, Dr Moreau was on a call-in English language CBC show in Montreal which starts at 12 noon.

I must say I was highly, deeply, and profoundly disappointed in the programme. The host, Rebecca Ugolini, kept calling the illness Chronic Fatigue. The impression given was that the person is just chronically tired. Dr. Moreau also tended to focus on 'fatigue." I did not feel that he highlighted enough the gravity and severity of this condition. He also said there is no pain in cFS/ME! This, is not true based on every ME patient I have ever spoken to.

To be accurate and fair, he did in the course of the one hour call-in programme state that patients could be severe and bed bound. This was not adequately presented. The utter unrelently symptoms were not described at all. Thus, the callers to the programme were folks who talked of their 'fatigue."

One caller stated that she was very tired, and so tried apple cider vinegar and that cured her fatigue. She recommended this. Another lady called who had a very sick daughter, and my sympathies went to her because the daughter did sound like a classic ME patient. However, it seems that relief was obtained from a naturopath. From most callers, with the exception of one at most two very informed people, the impression given was that is a "I'm tired" illness.

During the programme, Dr Moreau stated that he believed in 3 years there would be repurposed drugs available to address symptoms. There was no discussion ever of a 'cure.' He mentioned subgroups briefly.

This programme (I am not speaking of the funding or the research at St Justine) was such a profound disappointment. The host was totally clueless and Dr Moreau did not sufficiently, in my very humble opinion, counter her, and did not adequately emphasise the true nature of this nightmare.

This is my personal view of the programme: Radio Noon. I would be delighted to hear how others felt about this. Perhaps this is a separate thread. But I doubt many folks here heard the show.

 

Hi Perrier, thank you for sharing your thoughts. The emphasis on fatigue is an issue that we wrestle with. I do not like when my disease is depicted in this manner. I am not tired! I am sick. The individual symptoms are not fatigue related. I have lactic acid in my legs. It means I must lay down. Or i must stop talking because my thoughts become slow and my speech even slower, a bit like when you eat something freezing too fast. Brain freeze.

In terms of pain, i do not particularly have pain in my illness presentation. (EBV onset)- I may have had bouts of headaches, but otherwise nothing i can directly link to ME. However i note i have developed chronic pain stemming from ankle surgeries, as if my body could not heal that injury. The pain is in the surrounding muscles, calf and arch of foot. As i said not related to ME.

 

This link may not be available outside Canada but the radio programme is here:

https://www.cbc.ca/player/play/1591586371765

Also, Rebecca Ugolini is on twitter: @RebeccaUgolini

I think generally people unfamiliar with the true nature of ME really don't understand why calling it chronic fatigue is insulting. As for Alain Moreau it's always disappointing when those who have access to mass media don't rise to the occasion in terms of defending patients by clarifying important points.

We can only let them know what we hope for from them and hope they listen.

 

Thank you @Perrier for your review. And @Snowdrop for the link.

I have noted for many years now the CBC almost completely ignores ME. It's either not of much interest at all, or there is an advisory not to cover this topic. Coverage was virtually nil a few years ago. CTV provides better coverage of ME. CBC, our public broadcaster does not.

 

Yes, Milo, I hear what you are saying very well. Many folks with ME have severe GI problems which lead to days upon days of pain. Many are so sick with the toxic sick feeling that they are in agony from it and find it hard to sustain. Some have fibromyalgia pains in addition.

The thing I also heard from Dr Moreau is that he says this is not just one thing but this is spectrum of conditions, and different folks have a different constellation. I find this to be utterly hopeless then.

I found his talk was fine for researchers who have a life long career plan in this area or wish to consider this area, and want to investigate one thing and another related to this illness, but there was no urgency whatsoever in the presentation. This I found very depressing. Yes he indicated, it was worth looking at Vitamin D, and environment, and toxicity, and supplements, and all these were potential projects. So, they all have a career plan, as I say. This leads me to the very pessimistic conclusion that the results of all their research will benefit future generations, and not the very sick now.

The whole thing made me feel I was in a deep morass and there was no way out: no knows what is going on in this illness.

I did contact the radio and told them to tell the host to stop calling it'chronic fatigue.' She then started changing it a bit.

I found the show very discouraging.

 

I was told by a CBC staffer that to contact someone with the CBC you can write their first name, then put a dot, then their last name, and then @cbc.ca

The host's name as above re her email would be: Rebecca.Ugolini@cbc.ca

I don't know if this will work for everyone at the CBC.

Why oh why do people shorten Chronic Fatigue Syndrome to "Chronic Fatigue"? It's bad enough to have been saddled with the stupid, trivializing, demeaning, stigmatizing name "Chronic Fatigue Syndrome", but then to shorten it to "Chronic Fatigue"?!!!

Well, I know why, because CFS to them just means tired, and nothing else.

It's too bad the media viewed this story as a regional one, and not a national news story. The media is frustrating that way. Guess the event has to be absolutely spectacular to garner much interest at all.

ETA: I think phone in programs are quite difficult - one may get all kinds of wild cards. Just a regular interview would probably have been better. I can think of two CBC programs that would be good to air interviews on: "White Coat, Black Art", - a program about medical issues, and "Quirks and Quarks" - a science program.

 

Media coverage will unfortunately continue to be mostly abysmal for the foreseeable future. There's just so much inertia behind the CFS sabotage that it takes the kind of serious dedication to research and seeking conflicting viewpoints that simply does not happen in journalism, too expensive.

To properly communicate the facts of this disease, we will have to do it. Unfortunately, we need treatments for that, which has been purposely delayed and sabotaged because of disinformation. Even Ron Davis often uses "fatigue", just because that's the word people know. In the US, barely anyone knows about ME. It's all fatigue, always. The sabotage was incredibly successful. What a mess.

 

To some extent I think they gauge interest by number of clicks. I noticed that the news story I linked to on the CBC site did not remain up very long.

More people will see the short descriptor of the story if that story has previously been clicked on (or so I think that has an affect).

For anyone who hasn't seen it the link is: https://www.cbc.ca/news/canada/montreal/myalgic-encephalomyelitis-canada-icancme-1.5257415