UK Media coverage of NIH/FDA paper

[thegodofpleasure]

Please excuse the UK's arrogance

I Emailed The Guardian newspaper this morning, asking them to do a follow up to the story they ran on Jan 6th, after the Imperial College study came out. Hpefully the delay in reporting is due to them compiling an "in-depth" response rather than a regurgitation of superficial Press Association material.

As a UK resident, I continue to be both ashamed and embarrased by the apparent arrogance which we display (as a nation, not individually) towards the groundbreaking work that is going on in the U.S.
I'm ashamed because as a country, we are in my opinion, "sponging" off the work of others (and not making a properly funded contribution to help the research effort) and embarrased because some of our UK based researchers compound that failing by criticising and undermining the likes of the WPI.

I can only say that I am personally sorry.

TGOP :Retro redface:

 

[RustyJ]

Just did it. Well done Sasha:Sign Good Job:

 

[VillageLife]

Ok,

the BBC reported professor wessleys negative paper
http://news.bbc.co.uk/1/hi/health/8441491.stm back in January.

But the BBC have not reported a new positive study by the FDA/NIH!

The BBC is one of the best news organizations in the world. I just cannot believe this.

 

[Sasha]

Just did it. Well done Sasha:Sign Good Job:

Thanks, Rusty! There are some good comments on there generally - I just scanned the most recent and the best rated and liked what I saw - not ranty, just well argued, good, calm, concise points. And it comes across that PWC want to protect others by protecting the blood supply.

We're looking good!

 

[Sasha]

Happy to say that 22 comments on the Daily Mail article are now up, including mine. They have a "best rated" section where they show the five that have got the most votes so far and mine is currently rated second.

I think it's important to keep CFS-positive messages rated high so we keep the trolls down. If you like the message I posted there (I am on there as "Alexandra, London"), please click on the green "up" arrow to bump me. My message raises the important points that we're talking about a retrovirus, that it's likely in the UK blood supply, that ME/CFS is a serious disease and the govt needs to act with more research, protection of the blood supply and "proof of principle" clinical trials.

Here's my message:

Thank you for covering this important story (ahead of the other UK media!).

The study has very important implications. The virus in question is a retrovirus (as is HIV, which causes AIDS) and is very likely to be in the UK blood supply already. 7% of the healthy control group in the study - all blood donors in the US - had the virus.

The UK government should be taking this extremely seriously. It should be starting up its own MLV research programme and acting swiftly to protect the safety of the UK blood supply.

ME/CFS is a serious and often severely disabling disease. Everything possible should be done to help those who have it and protect those who don't from getting it.

An expert commentary on Dr Alter's study in the same journal called for "proof of principle" clinical trials of anti-retrovirals for people with ME/CFS to be started immediately.

This is a huge story and I look forward to the Daily Mail's continued coverage.​

And here's the link to the page (click on the "best rated" tab to see it).

Thanks for the bumps, guys! I'm maintaining my position. I think people will be finding this Daily Mail article long after today and it will be good if they look at those comments and find the info about why the story is so important.

I really hope the Mail follows up on this story.

 

[Min]

I Emailed The Guardian newspaper this morning, asking them to do a follow up to the story they ran on Jan 6th, after the Imperial College study came out.

Maybe they are looking for another anonymous doctor to repeatedly denigrate both us and the research findings now that Dr Crippen has retired? The Guardian is the last UK newspaper we can expect fair coverage from.

 

[Trooper]

I am glad to hear the comments made it onto the Daily Mail site. I am still boggled that this hasnt been picked up anywhere else.

Anyway, thanks Villagelife, your last post spurred me into contacting the BBC and very very politely asking WTF is going on as well as explaining how this story beats the last story they ran on CFS/ME.

Thanks everyone else too for writing and commenting : )

 

[Kate_UK]

New Scientist have it online

http://www.newscientist.com/article/dn19361-virus-link-with-chronic-fatigue-syndrome-resurfaces.html

 

[Esther12]

The Guardian is the last UK newspaper we can expect fair coverage from.

By most standards I'm rather to the left, but I still have to recognise that the abuse met out to CFS patients in the UK is a lefty, paternalistic sort. If it is shown that XMRV (or related) causes CFS, and all the psychological stuff was just nonsense, it will be the Daily Mail that's on our side and the Guardian that is making excuses for those who screwed us over.

 

[ukxmrv]

The Guardian doesn't only "make excuses for", it only celebrates and collaborates with those who denigrate us.

We may get a glimpse of fairness occasionally but we do know that when ever they print a moderately supportive article on ME, then a longer, more damaging one is also in the pipeline.

 

[Sasha]

New Scientist have it online

http://www.newscientist.com/article/dn19361-virus-link-with-chronic-fatigue-syndrome-resurfaces.html

Ugh! Well, at least they covered it but it's rather a poor article. They describe CFS as involving "cramps, listlessness and lethargy". And focus heavily on McClure's scepticism of the Alter findings.

I can't get upset at this kind of stuff any longer. I convinced now that history will be on our side and that it will be on it very quickly.

Perhaps we'll see some better stuff from more UK media later.

 

[VillageLife]

Myra McClure of Imperial College London, who headed one of the two British studies that failed to identify the virus, says that Lo and his colleagues could have done two further tests that would have strengthened the evidence that the patients' cells contained live, infectious viruses.

By growing patients' cells in the lab alongside healthy cells, Lo's team could have proved that the virus could cross-infect uninfected neighbouring cells. Also, they could have screened blood for antibodies to the mouse viruses, which also would have shown that the viruses were infectious. "It would have been more reassuring to have those results too," she says.

I'm sure Dr Harvey Alter.... chief of infectious disease NIH, felt he did everything that was necessary!

 

[pictureofhealth]

ME Association (UK) Summary & Statement on the Alter/Lo paper

The UK's ME Association summary and statement on the Alter/Lo paper is now up on a separate thread under the Media, Interviews, Blogs, Talks, Events etc section.

It is quite detailed and I have posted it in full on their behalf as they are unable to post on their UK website at the moment (tech guy is on holiday). So there is no other direct link to the statement elsewhere on the web just yet.

 

[ukxmrv]

If she wants "reassurance" she can bleeding well do it herself.

Oh dear, I keep forgetting she doesn't have a test that works on CFS!

 

[OverTheHills]

Ugh! Well, at least they covered it but it's rather a poor article. They describe CFS as involving "cramps, listlessness and lethargy". And focus heavily on McClure's scepticism of the Alter findings.

I can't get upset at this kind of stuff any longer.

Sasha I can only admire your equanimity.
I cannot post a comment on this articles infuriating, insulting and plain wrong description of 'chronic fatigue syndrome' - you need to be a subscriber to comment. Perhaps someone on these boards has a New Scientist subscription P l e a s e!

OTH (discombobulated)

 

[V99]

I'm sure Dr Harvey Alter.... chief of infectious disease NIH, felt he did everything that was necessary!

Others have pointed this out elsewhere, but that is what the WPI did. Oh Myra you are funny

 

[Sasha]

Sasha I can only admire your equanimity.
I cannot post a comment on this articles infuriating, insulting and plain wrong description of 'chronic fatigue syndrome' - you need to be a subscriber to comment. Perhaps someone on these boards has a New Scientist subscription P l e a s e!

OTH (discombobulated)

Not sure if it's equanimity or a defence mechanism, OTH!

But I am increasingly at the point where I can't see a plausible alternative to XMRV/MLVs being "it" for CFS. One can't find evidence of an association by error or due to contamination unless there are particular kinds of design flaws in studies that certainly weren't present in the Alter study, such as failure to blind properly. And the magnitude of the association - 87% of cases vs 7% of controls - is both huge and essentially a replication of that found in the Science study.

It really does seem like it's only a matter of time before the whole balance of the thing tips well beyond the point where people can get away with stupid comments and I think that's going to be on the scale of weeks. I think the info from the upcoming XMRV conference might be the tipping point.

 

[*GG*]

The Daily Mail comments system is just a bit odd. Don't take it personally.

Looks like this might be the only UK coverage.

It's for our own good. If the media were to inform us of this news, it could make us all hysterical with worry, and give us too excellent an excuse for avoiding the terrible stress and responsibility of being healthy. How very sensetive of them. How very brave.

Sarcasm, I love it!

 

[pictureofhealth]

Letter to the Editor - New Scientist

I just emailed the following letter the the New Scientist magazine for potential publication.

I am not a subscriber and I don't know if my letter is too long, but I emailed it anyway.

I mentioned the Kings College team (-ve study) specifically, as that will be the one that they are most likely to know about (unfortunately).

..............................

Dear Sir,

Many thanks for covering the important story of an apparent link between retroviral infection and M.E./ Chronic Fatigue Syndrome. (Andy Coghlan, NewScientist Online, ‘Virus Link with Chronic Fatigue Syndrome Resurfaces’, 25/08/10).

This devastating illness of neuro immune pathology can leave sufferers profoundly exhausted, paralysed and bed ridden for years, requiring, in many cases, tube feeding and full nursing support. An estimated of a million patients are in the UK alone, although the figure may turn out to be considerably higher once further biomedical research gets underway.

XMRV and related microorganisms (Mouse Leukaemia Virus Related Viruses) are proving notoriously difficult to find in the blood (as a King’s College team discovered earlier this year), but post mortems from recent animal model studies in the US demonstrate that these viruses migrate to the organs quite quickly.

I was encouraged to read that a number of researchers from the UK will be attending the world’s first XMRV Conference in the US this September, where an extraordinary constellation of the world’s top retrovirologists will assemble to discuss these exciting new discoveries and make decisions upon subsequent pathways for research.

Positive findings already made from additional studies (including the UK & elsewhere in Europe) will be assessed, as will the vital subject of how to maintain the safety of the blood supply for future generations (a huge priority given the 7% positive rate in healthy controls from the FDA/NIH Lo et al paper).

Dr Harvey Alter, a co-author of this latest positive US study, also discovered the Hepatitis C virus. Given his long track record and unassailable scientific credentials, I consider this new and stunning discovery to be highly credible.

Yours sincerely,

 

[filfla4]

Well done!!! Excellent!!!