So CVID finally gets some media attention...

[s162216]

... pity they couldn't get it right!

Noticed this article the other day:

www.dailymail.co.uk/health/article-2343398/Catch-bug-going-A-fresh-blood-answer.html

Reading through it they seem to have got it completely wrong, since when do we get given a 'top up of fresh blood' or a full on blood transfusion like the picture shows? Seems that their background research on the subject was poor and as we so rarely get any mention in the press it would be nice if they could have got it right!

I've already emailed the editors of the paper and the online edition asking for them to correct it and it would be great if as many others as possible could. The relavent people you want to email are:

[e-mail] (Online edition)

Paul Dacre (Editor) [e-mail] or [e-mail]

Sam

[susi]

I agree, it was quite exciting to finally read something about other people and experiences but it was not a great piece and the comments made really were upsetting and made it real that some people think we could have looked after our immune system better oh if only that was the case.just had my infusion and feel crap....

[s162216]

I agree that some of the comments were rather upsetting, thanks in no small part probably due to the inaccuracy of us receiving 'blood' for treatment and for some of those idiots to claim that it was our own fault because we ate the wrong diet or had too many antibiotics! Why do they think we need the antibiotics in the first place? I've not received a reply to my request for a correction yet and the article has not been corrected so I urge everyone to send in a complaint/ request for us!

I've now decided that if I don't get a response within a few days I will make a complaint to the Press Complains Commission on the grounds of accuracy as the article just has gaping inaccuracies in it.

Sam

[mali42]

Hi Sam
It was good to see that in the paper and i just ignore the bad comments from silly people which unfortunately can't be avoided,

Reading one of the replies from someone who thinks her boyfriend might have problems with the immune system highlights the good these articles can do but i wish they would spend more time with the minor details,

Malcolm

[s162216]

Well as I have received no reply, I have submitted a complaint to the PCC, I'll let you know what happens.

Sam

[s162216]

I've had a response from the Daily Mail (courtesy of the PCC) and they've removed the picture of the bag of blood although their claims as to the title being acceptable as the IVIG is obtained from blood is still in my view unacceptable so I've sent back more comments for the PCC to discuss with them. Hopefully they'll correct it.

Sam

[john]

Hi all,
I just speed-read the article, and considering they spoke with Dr Huisson, it is a pity they got the details wrong.
But remember, it is the Daily Mail, ever the sensationalist newspaper!! Hopefully as it's always said, any publicity is good publicity, and it won't cause any actual harm to us.
They also didn't mention the sad fact that we can't use British blood as the raw material, thanks to the "mad cow" episode!!
I do remember having a fair bit to do with Margaret when I was at PiA, her trip to Peru was used as an inspirational story for people who tended to think their lives were over once they had received their CVID diagnosis!!

[s162216]

I've now finally got back a response from the Daily Mail after the PCC prodded them for a response: they've agreed to alter the online article to be much clearer as to the diagnosis tests etc but am still not backing down about the blood issue despite them actually admitting that we don't get blood!

Sam

[s162216]

Now finally got a good result on this, the Daily Mail have agreed to add a clarification to the online article:

"For the avoidance of confusion, we are happy to make clear that CVID is treated with immunoglobulin G, which is a clear liquid, extracted from blood plasma."

I have on top of this asked them to print this in the Daily Mail as it is unlikely that many people will see the edited online article, and hopefully they will agree to this. Whilst having the headline altered to remove the blood part would have been great this is the most that I think we will get, and along with them agreeing to clarify the diagnosis tests the article is immeasurably improved in comparison to what it originally was (this is assuming they keep their end of the bargain of course!)

Sam

[john]

That's some result Sam!
Very well done.g

[glowing]

Wow Sam. Good job done.

[s162216]

Well the whole thing has been resolved now the best extent that I can:

www.pcc.org.uk/case/resolved.html?article=ODU4NQ==

Its interesting actually if you compare the original article at the internet archive (web.archive.org/web/20130618012143/http://www.dailymail.co.uk/health/article-2343398/Catch-bug-going-A-fresh-blood-answer.html [this can take a while to load]) with the corrected one here (www.dailymail.co.uk/health/article-2343398/Catch-bug-going-A-fresh-blood-answer.html) as they've now correctly defined the tests to a fair extent (how they though an average GP will know what 'FISH tests' referred to I'll never know considering despite me doing extensive research into clinical tests I could find no mention of that acronym) and removed the plainly incorrect information about it being the same test as for anaemia. Plus despite them not changing the headline, at least I was able to get them to put a clarification on the article and remove that damn picture of the bag of blood! Coupled with the clarification the headline makes them look like right idiots...

Sam

[john]

I noticed that a copy of this article was on the PID notice board at my clinic today.
I told the nurse that it made us look like vampires, so they took it down!

[s162216]

Strangely thats the exact same reaction that a lot of commentators gave on the online article (before it was corrected). God the Daily Mail really knows how to choose its headlines...