Newspaper Article

filfla4

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http://www.maltatoday.com.mt/news/n...reconsider-its-position-on-chronic-fatigue-sy

This is a link to a newspaper article which appeared in my local paper of last Sunday. I live on the tiny island of Malta in the Med, and the newspapers here vey rarely print anything to do with ME/CFS and even less to do with XMRV.

Following the recent debacle with the pulling of the FDA/NIH paper from publication, I'd just about had it. I cold-called a journalist aquaintance of mine and told him whole story about XMRV. At least I managed to spark some interest in him and I followed it up with an email with several links for him to read. For a whole week we went back and forth with questions....he also asked the local Ministry of Health to comment, and then me for my reaction. I was constantly referring back to my local email support group and this is the result.

I encourage those of you who live in areas where the story is not being covered to do the same!! It's a shame that the journalist left out the fact that the paper had been stopped from publication, but at least it creates awareness of the condition, particularly for health benefits for sufferers.
 
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Good article for the angle they took. And the angle they took is very appropriate for that location: Local health ministry re-evaluating, what the disease is, recent researcher that has caused different opinions.

They gave a lot of space. I don't see any mention of the FDA / NIH study. That is a shame. But everything else was very good.

Tina
 

taniaaust1

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great job.. and its a quite good article :) . I think its great they put that bit in about the CDC study, that is something everyone needs to know esp medical professionals, scientists etc

Canada, UK and Australia.. dont screen the virus as such (an approved way to find it is still in development) but in Canada and Australia ones with CFS or who have had CFS are banned from donating due to possible XMRV.
UK CFS patients are banned from giving blood too (i dont know when that was introduced or the whys of it there)

In a rceent interview with CFS Central, Dr Myra McClure and Dr Kate Bishop, two of theBritish researchers involved in the CDC study, admitted that their studies were not replications of those conducted by the WPI.

However, this has not stopped the media in several countries from persisting in erroneously reporting that the CDC study ‘disproved’ the findings of the team led by Dr Mikovits: a fact which has dented the impact of the WPI study.

Either way, some countries - including Canada, the UK and Australia - have taken to automatically screening blood donations for the XMRV retrovirus, as most countries already do in the case of HIV.
 

filfla4

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Thank you all for your positive comments. I have to say however, that 'Malta Today' is considered to be the more hard-hitting newspaper locally, with more investigative reports, yet lower circulation. Its readership would be younger yet is closely watched by the establishment. I have tried for a long time to think up ways to get to 'The Times of Malta', which is much more conservative but is the highest circulation daily. Any suggestions out there from PR gurus?

The medical profession here is largely ignorant of ME/CFS and I have personally been to several consultants who totally disregard the condition. Fortunately I have an understanding physician. Through my local email support group I know that there are many sufferers here, several bedridden, who get no support whatsoever. Hopefully this sort of thing will raise a little bit of awareness.
 

ukxmrv

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It's a brilliant article and I do hope that it helps improve conditions for people in Malta.

At the very least it raises public awareness. I'm sure that some of your bedridden sufferers may have problems with even those close to them.

I know from my own experience in the UK, how useful it is to have something positive and informative for once in the press.

Thank you for all the work getting this published and for posting it here!
 

ixchelkali

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Well done, filfla4!

When I was first sick and learning about ME/CFS, I read about how patients on Malta were being treated. When I'd start feeling angry about the lack of care available from my HMO and the hurdles to getting disability benefits, I'd think to myself, "Well, at least I don't live in Malta." It was my way of counting my blessings.

But now, I feel like we're all in this together. I feel like we need to keep going until the discrimination and mistreatment of ME/CFS patients all over the world ends.

I also feel like every victory, as getting this article published was, is a victory for us all. So WTG, filfla4!
:Sign Good Job:
 
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All

All I can recommend is:

1) make it easy for the reporter. In today's economic realities, they have little time for "investigation". Someone who can give contact info and sources helps them along and they will be more likely do the story if they don't have to spend a lot of time looking up phone numbers.
2) be direct and short in your communication. Reporters get many, many press releases and stories pitched to them, not to mention complaints of past articles, that eat up a lot of time. If they have to read more than three paragraphs to get the jest of what you are trying to communicate, you may have lost them.
3) Offer them a real life example, people who have the disease, so they don't have to go looking for someone. Stories about illnesses are often told with an anecdotal lead, that is the story of an individual, which leads to the meat of the story.
4) Present the point to them that will interest broad community. For example, telling of something that would only be of interest to CFS patients, will likely not get their attention. But telling something that interests community at large, will likely be more "newsworthy" in their minds.
5) Be persistent without being a pest. A phone conversation might be helpful. Even going down to talk to someone, if you can get past the receptionist. E-mail, of course. There is a fine line between being available, reminders and being right there when the reporter is looking for a story and becoming a pest so that the reporter immediately dismisses any communication from you.

Tina