CBC: No blood from chronic fatigue donors: agency : Your comments are requested!

Kati

Patient in training
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CBC (Canadian Broadcast Corporation) has posted this article online and it is now open to moderated comments. Now is the time to voice your opinion and check out the article online- The title is a bit inflammatory (chronic fatigue donors) but in the same time in my opinion, it is giving ME/CFS and XMRV exposure and hopefully attention from scientists and doctors.

http://www.cbc.ca/health/story/2010/04/07/blood-donations-chronic-fatigue-virus.html

Thank you
 
K

_Kim_

Guest
Kati, is that correct? It is NOT open to moderated comments? Or did you mean: It is now open...?
 

Kati

Patient in training
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Sorry Kim, it is!!! I will make the correction- you need to register but worth it...
 

MEKoan

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What I really like about the way this is being covered is that the reports are NOT going into whether this is a biological illness or a neurotic belief. The pertinent issue now is whether or not it is caused by a virus, XMRV specifically, and not whether or not it is a serious illness. That's a big step in the right direction.
 

Tammie

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It wouldn't let me register.....I really wish that someone would point out the fact that CFS and chronci fatigue are NOT the same thing.....I am very glad that they are not allowing people with CFS to give blood, but the darn article (& many of the commetns following, inc one from someone who sounds a bit self-righteous and who "recevoered from chronic fatigue"- definitely not CFS) all just exacerbate the stupid focus on fatigue and increase the confusion abtout he darn name
 

Wayne

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Thanks Kati for posting this, and thanks for your great comment on the website. I just commented with the following:

I've had CFS (not chronic fatigue!!!) for over 30 years. There's been a LOT of evidence during most of this time period that this severe neuro-immune disease is infectious. As such, I have not given blood during this entire time; it would have been HIGHLY irresponsible for me to do so.

Regarding the comments made by Luvtheright: He claims to be a doctor, which if true, should give people a LOT of insight into what patients with CFS experience on a daily basis. Most doctors we visit are highly undereducated and mostly take their cue from the CDC, which is currently scrambling with this new XMRV discovery.

By scrambling, I refer to their abrupt decision to replace the head of their CFS research dept. head of 19 years who has long maintained CFS to be psychological. The medical science research community is watching this XMRV association with CFS quite seriously. Much is yet to be learned, but it does seem there is at least an assocation between XMRV and CFS.

The Canadian authorities are being VERY responsible with their decision to ban blood donations from people with CFS. I think it should be pointed out however, that approximately 3-4% of healthy controls also tested positive for XMRV as well. Will they eventually develop CFS? Nobody knows. But responsible authorities need to be asking a LOT of questions and monitoring this VERY diligently.
 

glenp

"and this too shall pass"
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mine is up too


glenprich wrote:posted 2010/04/07
at 9:34 PM ETThank God Canada has stepped up to ban the CFS donations. Some news that I am hearing is not accurate - most are too ill to donate and the blood supply has had little chance to become affected. That statement is not accurate, many who suffer with CFS have not yet been diagnosed or wrongly diagnosed. Many have been diagnosed as depressed and other mental illnesses, many who continue to donate blood, unknowing that they even have CFS .

Read more: http://www.cbc.ca/health/story/2010...tigue-virus.html#socialcomments#ixzz0kTSRcV3m


Read more: http://www.cbc.ca/health/story/2010...tigue-virus.html#socialcomments#ixzz0kTSRfmzK
 

Kati

Patient in training
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That dr Luv the Right is certainly more into the wrong and not doing his homework. Here is what he said:

As a doc, I have seen many people with CFS. Personally, I have a hard time believing that there is a virus or some other unifying process to explain the symptoms. Most research does not support a viral cause; indeed, this virus XMRV is found in only 67% of patients in the study mentioned in this article. At least three other research groups have found NO ASSOCIATION between XMRV and CFS. Sounds like the "chronic EBV" story again.

This makes the CBS move irresponsible. It's political, not scientific. Makes the CBS look like fools, if you ask me.

Moreover, Kati Debelic is wrong. A ton of money has been spent on CFS and fibromyalgia in the past 20 years. The only treatments that work are cognitive behavioural therapy (ie - psychotherapy) and exercise. Does this make any sense at all for a virus? I defy anyone to name another viral illness that gets better with psychotherapy.

I understand why docs are a little cynical and overall frustrated with this. How do you treat "I'm so tired"? Or deal with "I'm weak and achy"? What do I say to someone who wants to go on disability because they are tired at age 35? The data says get some counselling and get some exercise

Read more: http://www.cbc.ca/health/story/2010...tigue-virus.html#socialcomments#ixzz0kTT6Pc0P

...and I couldn't help myself but answer- which should be posted in a little bit- the content will be edited with my answer. I understand this has gone way beyond blood transfusion, and partly my fault :innocent1::ashamed:but I have warm blood and I had to vent a bit- after all I am still a rookie, and not planning on being an old timer with this disease.

Am gone to war. With my whole name.
 
G

George

Guest
Kati I wouldn't worry about Dr Luv or whatever, like as not he's just a poster who is trying to start a fight and put doubt into the readers minds. What I'm wondering folks is who has Dr. Paul Jollicoure been talking too(big grins). What where the results of his study??? Mmmmmm? Isn't he speaking at tht next CROI in Prauge? ( grins)

Nice avatar Julious! Want to snuggle?
 

Kati

Patient in training
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Yeah lots of good news to come, that will knock the socks off all these people that think we have false illness beliefs. The poor doctors will need Paxil and Valium when they will need to learn all about CFS.

Did you mean Dr Jolicoeur? It's a french name, it means Pretty heart. ;)
 

julius

Watchoo lookin' at?
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I responded to doctor loves Sarah Palin. I tried to be clean, but couldn't help get a little jab in at the end. I hope it makes it in.
 
R

Robin

Guest
What I'm wondering folks is who has Dr. Paul Jollicoure been talking too(big grins). What where the results of his study??? Mmmmmm? Isn't he speaking at tht next CROI in Prauge? ( grins)
Yes!!! Along with some other people we know.

http://www.forums.aboutmecfs.org/sh...-Prague-April-29-May-04-2010.-Can-someone-go-!

Presenters include:
Paul Jolicoeur (Clinic. Res. Inst., Montreal, Canada) Presentation: Action @ the cell surface
John Coffin (Tufts, MA): Presentation: Retrovirus Evolution
Jonathan Stoye (NIMR, London, UK): Cellular Defenses
Francis W. Ruscetti (NIH, MD): Roles of Innate and Adapted Defenses in Infections by Retroviruses
Stephen P. Goff (Columbia U, NY): Summary observations
April surprise????

ETA: XMRV is NOT on the menu

http://www.crm2010.org/programme/provisional-programme.html

BOO!