• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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I think we hit the lottery!!

SaveMe

SaveMe

Senior Member
Messages
421
Location
the city
Dear K****:

Thank you for your email of April 2, 2011, inquiring into the clinic for complex chronic diseases. I have been asked to respond to you on behalf of the Honourable Michael de Jong, Minister of Health.

As you are aware, the Ministry of Health asked the Provincial Health Services Authority (PHSA) to present options for a clinic for patients presenting with complex symptomatology possibly related to underlying infectious diseases. As a result of the proposal the Ministry in partnership with PHSA is developing a provincial clinic and research study that will help patients with complex chronic diseases, such as Lyme disease, fibromyalgia, and chronic fatigue syndrome.

The clinic and research study are in development and should be operating by Fall 2011. The clinic will take referrals from family physicians or other health care providers for patients with symptoms of these chronic illnesses. The goal is to help patients by accurately diagnosing their conditions, providing treatment and helping with ongoing symptom management.

Additional information about the clinic will be available from your family physician after the development of the program is complete.

Again, thank you for writing. I appreciate the opportunity to respond.

Sincerely,

E+++e H++++y
Executive Director
 
B

boomer

Senior Member
Messages
143
So this relates to the Province of BC only. Lucky Vancouver! Wish Ontario would do this too.
 
I

insearchof

Senior Member
Messages
598
SaveMe

Is this letter a reply to a letter you wrote, or a reply to a letter written by someone else, which you have posted here?
 
I

insearchof

Senior Member
Messages
598
SaveMe said:
oh, and all this time, i thought he was writing specifically to me. grr
Click to expand...

looks like we cross posted, so your "Kevin"? ( which appeared before I formulated this post and which I see you have now edited out)


Why would a MP from BC Canada respond to a NEw Yorker in terms that suggest they were talking to a local constituent familiar with local health politics?

Also, in chat whilst we were watching SoK you spoke about how you missed out on getting into a study, and you posted an email reply to you to this effect, in chat.....but that email was addressed to someone called "Rob"

Sorry, but I am a little confused.
 
justinreilly

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
Wonderful news!! (sounds like it will take ME seriously judging by the talk of possible infectious disease). Thanks for cheering me up!
 
SaveMe

SaveMe

Senior Member
Messages
421
Location
the city
insearchof said:
SaveMe

Is this letter a reply to a letter you wrote, or a reply to a letter written by someone else, which you have posted here? Why would a MP from BC Canada respond to a NEw Yorker? Whats your real name?--Im confused?
Click to expand...

This message is in response to a letter I personally wrote. Because the clinic is open to the world!! But maybe he mistaken me for a local.
Lastly, I prefer to remain anonymous.




I never met somebody as keen as you, looks like someone doesnt have brain fog!! :)
 
I

insearchof

Senior Member
Messages
598
Originally Posted by insearchof

SaveMe

Is this letter a reply to a letter you wrote, or a reply to a letter written by someone else, which you have posted here? Why would a MP from BC Canada respond to a NEw Yorker? Whats your real name?--Im confused?

This message is in response to a letter I personally wrote. Because the clinic is open to the world!! But maybe he mistaken me for a local.
Lastly, I prefer to remain anonymous.

I never met somebody as keen as you, looks like someone doesnt have brain fog!! :) Last edited by SaveMe; Today at 02:19 PM.
Click to expand...


Hello SaveME

My reading of the letter and the press release material would suggested to me, that it is a provincial and not an international clinic. If it were otherwise, I would have thought that they would not have missed the opportunity to state this clearly ie ''international clinic'' and promote it loudly. I would also have expected an international clinic to be funded with a contribution far exceeding $2M. So I am not so certain that it is an international clinic, or why you might have thought so.

I agree he may have believed you were a local especially given the following reference, as it seems highly unlikely that Canada would be making information on the clinic to family physicians across the planet.

Additional information about the clinic will be available from your family physician after the development of the program is complete.
Click to expand...



Though, I think someone already made mention that this was a pro forma letter. So perhaps the gentleman who responded to you, was himself suffering from brain fog by sending a pro forma letter on a provincial clinic/health matter, to someone in NY, USA.

I understand your desire to remain anon online, so perhaps it was brain fog that caused you to post the material making reference to your name(s) on two seperate occasions.

If you are employing an alias for the purpose of corresponding with MPs and medical researchers to protect your identity, then I am afraid that is something I also fail to understand, especially with respect to the later, but thats fine.... only that failing to clarify that here, can make it a little confusing to follow.

Of course, if you wish to misrepresent who you are to the outside world or here, in order to protect your identity, that is all well and fine.... but please refrain from misrepresenting my remarks by altering my posts when choosing to quote me. If you have trouble with that, then in the future, please do not quote me at all.

As for brain fog, thankfully I dont suffer with it 24/7. Even so, brain fog does not render one completely unintelligent.

As for never having met anyone as keen as I, look around. I think you are forgeting where you are.
 
C

Chris

Senior Member
Messages
845
Location
Victoria, BC
I am assuming that the clinic will be set up within the framework of the Provincial Medicare system--that is, free for residents of BC. I know that non-Canadians who need to use Emergency care in Canada are charged, though I think the charge is considerably less than that made by US hospitals. I do not know whether non-Canadians will be able to access continuing care in such a clinic--I frankly suspect not, since it will be paid for by those paying BC taxes. But maybe it will be open, for a charge...

We from BC hope that it will continue the tradition set by the now retired Bruce Carruthers, of the Canadian Concensus definition, and that it will collaborate with top researchers, including Gordon Broderick of Edmonton, Alberta, one of the stars of the "State of Knowledge" Workshop. Maybe Canada is getting back onto the CFS map! Best, Chris
 
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insearchof

Senior Member
Messages
598
Hi Chris,

I suspected that this was also how the clinic would operate. I do not think it is willingly throwing open its doors to the international community.

We from BC hope that it will continue the tradition set by the now retired Bruce Carruthers, of the Canadian Concensus definition, and that it will collaborate with top researchers, including Gordon Broderick of Edmonton, Alberta, one of the stars of the "State of Knowledge" Workshop. Maybe Canada is getting back onto the CFS map!
Click to expand...

That is indeed something to hope for.
 
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