xmrv test in Spain? Translate?

[parvofighter]

70 Retrovirology specialists meet on national retrovirus registry (AND XMRV) in Spain

Just wanted to let you know about a meeting of 70 retrovirology specialists in Spain 3 days ago. And YES, XMRV was on the agenda. I took the liberty of starting a new thread under XMRV Research and Replication News @: http://www.forums.aboutmecfs.org/showthread.php?t=1835 because I want to make sure folks from all countries can see this potentially important news.

My guess is that this retrovirology registry meeting was planned far in advance of the Oct 8th Science paper, but it is clear that this group sees the XMRV findings as worthy of prominent mention in their 3-line description of the meeting.

@ Sergio and others - can you tell us more?

 

[parvofighter]

Unofficial update: Blood Supply in Spain

More Goodies from Spain: http://translate.google.ca/translat...en-US:official&hs=sLR&tbo=p&num=100&tbs=qdr:d

- We also have reported that the Red Cross has issued an instruction to blood donation buses that do not support blood of patients with Chronic Fatigue Syndrome as a measure to prevent XMRV retrovirus present in 98% of patients in the first study by the U.S. WPI.
Late last month, the Banc de Sang i Teixits issued a note to their employees to not collect blood from donors with CFS, the recent discovery of the retrovirus XMRV present in 99% of patients with CFS.
- In the Hospital Can Ruti (Germans Trias i Pujol) in Badalona have given the order to the blood bank does not accept donors with CFS or fibromyalgia because of the retrovirus XMRV.

 

[Rita]

Yes, this is true the news from Spain, but a doctor has said that is very usual dont let giving blood if they arent a healthy people.If you have CFS they dont want your blood, not for to be CFS but not be a healthy donor.
CFS have a low blood volume its no good give yours if you have so little.
XMRV is another issue.
The spanish goverment knows about it , but they prefere to wait the validations and are doing nothing at all by the moment.
But CFS patients are very combative and are insisting they inform all the doctors about the retrovirus.We patients, know a lot, but many, if not all,doctors still believe this is a psychological illness.

 

[Recovery Soon]

Chart is Misleading

I know a decent amount of Spanish and I did not see anything offering a test. I think it is more of a reference article about what CFS is.

However I love this chart, it's so incredibly simple yet it makes very clear what so many people don't understand (SFC is Spanish acronym for CFS). Maybe we should make one in English and also make it more to scale to reflect real prevalance rates.

This chart is not good. It suggests that CFS is a more severe version of Fatigue, when in fact there is no relationship whatsoever. CFS is is a neuro-immune disorder. It's not a lot more tired, which the chart suggests. That would be like a diagram where coughing is on the outer ring and tuberculosis is in the inner ring.

 

[parvofighter]

Hi Recovery soon (and I like the name)

I took your feedback to heart, and thought about it a little:

This chart is not good. It suggests that CFS is a more severe version of Fatigue, when in fact there is no relationship whatsoever. CFS is is a neuro-immune disorder. It's not a lot more tired, which the chart suggests. That would be like a diagram where coughing is on the outer ring and tuberculosis is in the inner ring.

What I like about the chart is it illustrates in one very simple graphic, how science perverts and dilutes research on ME/CFS. Any sane and/or credible scientist genuinely wanting to learn about ME/CFS would ensure that their criteria are precise. And that they are indeed studying the patient population that they claim to be.

So in one quick glimpse at this icon, I picture:
1) ME/CFS Canadian/Fukuda criteria in the small dark circle.
2) Other sources of persisting fatigue in the medium circle, including depression, but also other organic causes.
3) And all the physically healthy folks who say, "I'm tired too" in the large circle, and that includes depression and simply deconditioned folks.

It's easy to say to a lay person: We're the small circle. We want ME/CFS research to only include subjects in that small circle. The Wesseley/Reeves etc psycholobby are drawing conclusions about the small circle (ME/CFS) by doing sloppy research that includes one or both of the larger circles(ME/CFS PLUS deconditioned PLUS depressed PLUS non-ME/CFS chronic sources of chronic fatigue). It's as absurd as doing research on all people who cough, and then claiming the results are prescriptive for tuberculosis patients too. People immediately get the analogy. It's very graphic and intuitive. And I think that simplicity is essential when we are talking to lay people, particularly when it comes to building the political will for change. Bottom line, this icon speaks to my gut, while importantly debunking the madness of the psycholobby.

But that does beg the question of whether it might be possible to capture the complexity of this neuroimmune disease in a simple graphic, and you're absolutely right that this is a direction we should be heading, once the public "gets" our basic concerns about research credibility. Kind of a Version 2.0. Any takers?

 

[Recovery Soon]

Hey Parvofighter/

I agree to the extent that if any graphic representation can visually convey that CFS is different from regular fatigue it might have some benefit.

The concern remains in my opinion, that overextended soccer Moms might look at the chart and conclude- "I'm so in that middle ring. I haven't had 8 hours sleep in months!"

I'm not sure it conveys our debilitating immune dysfunction.

Perhaps no display can do that.

 

[Alice Band]

What is missing from the chart are neurological diseases like MS that have fatigue as a symptom.

I wonder how much they would to be included like that.

We keep telling medics that fatigue is possibly not the right word for what we experience and it is nothing like the "fatigue" a well person feels.

No one listens.

 

[xanadu]

Chart problem

I can remember arguing about whether ME was a subset of fatigue during an epidemiology supervision more than 10 years ago. My tutor drew this very diagram. I pointed out that the small ME/CFS circle should lie mostly outside, overlapping enough to include fatigue, but many pwME say 'tiredness' is the least of their problems. He conceded the point.

 

[Marco]

I can remember arguing about whether ME was a subset of fatigue during an epidemiology supervision more than 10 years ago. My tutor drew this very diagram. I pointed out that the small ME/CFS circle should lie mostly outside, overlapping enough to include fatigue, but many pwME say 'tiredness' is the least of their problems. He conceded the point.

Agreed. CFS is a construct of the psycho-social lobby. Fatigue is not a syndrome - it is but one of many symptoms of ME as it is with many other organic diseases and some psychological ones. The degree of fatigue in each case will vary depending on the disease, the individual and over time. Post exercise malaise is almost unique to ME but is not simply an issue of fatigue but of exercise leading to exacerbation of a wide range of symptoms.

Without wishing to offend anyone (there's a lot of cancer in my family), referring to ME as CFS is analgous to referring to terminal cancer as chronic weight loss.

 

[Advocate]

Agreed. CFS is a construct of the psycho-social lobby... Post exercise malaise is almost unique to ME but is not simply an issue of fatigue but of exercise leading to exacerbation of a wide range of symptoms.

"...exacerbation of a wide range of symptoms." I'll try to remember that phrase, because it explains it so well.

 

[Lily]

Athene, YES YES YES!!!!

AAhhhhhhhhh..........soooooooo true!!!!!!!

 

[xlynx]

This seems interesting, considering I live in Spain at the moment I will give them a call tomorrow and find out.