Excellent radio Bristol Sonya chowdhury interview

https://www.bbc.co.uk/programmes/p05y3tpw

2:11 in.

Very good interview from knowledgeable, sympathetic interviewer and great interview by SC who I usually think is weak, not today. Covers numbers, why not better recognised /funded and cared for, how Sonya became AFME CEO and her son getting ill and impact. Calls for more recognition and injection of money for research and says public health scandal. I'd like to have seen this since 2013 but much more impressed. John was excellent too.

 

So, I’ve managed to listen to the interview with Sonya...it was really good!

 

Actually 2:11:00 in.

 

Thank you. I thought it looked wrong!

 

I noticed that she is better at getting the correct message out ever since the disease got a strong grip on her kid. She is now facing its realities and is putting out a correct message as opposed to when her son first became ill and she still couldn't get the messaging straight as it hadn't pulled her child into its pits yet. I think I remember her saying that her kid could still play sports and get to some classes and she wasn't understanding herself that her son should not be back at school and play sports. I am pretty sure he had already been diagnosed with CFS and already past PVFS diagnosis when he was back in school and playing sports.

 

I like she used the word “scandal” they have to keep using this word on all the interviews.
To be honest we need a few more things on each interview specially in the lack of support of family members, government and doctors we need some buzz words for them.

 

Well that was an excellent interview. Very well done to SC, professional, real, succinct, direct & i particularly liked the emphatic tone. very good thank you.

Thank you also to John Darvall, very well conducted interview

 

For those wanting to know, it finishes at 2:32:55.

 

I agree, it was good.

More generally, I do wish that very severely ME/CFS would be mentioned in the media. The public, and the medical and care professions, need to know that it can be that serious in some cases.

 

Thank you for your feedback on this interview, which I've shared with Sonya. I agree that the phrase "public health scandal" is effective and we will add this to the key messages we share about M.E. and its impact.

Clare Ogden
Head of Communications and Engagement
Action for M.E.

 

"Echoing the subtitle of the book Science, Politics .......and ME -a health scandal in our generation by Dr Ian Gibson and Elaine Sherriffs - Carol Monaghan described this trial as one of the biggest medical scandals of the 21st century." http://www.investinme.org/IIMER-Newslet-1802-02.shtml

 

Long may it blow that way

 

Yep, that snowball effect again. The more people and organisations see the tide of opinion changing, the more they're are jumping on board. The more it changes, the faster it changes. I think a lot of the BPS'ites are in half-a-crown-sixpence mode.

 

It's good to be Using more forthright language given the terrible impact the neglect is having. This forthrightness and powerful advocacy has to extend to where it really punches eg when you have meetings with NICE, MRC , DoH etc. Eg at the CMRC conference, when there was an hour discussing why the ME field was unattractive and not progressing, no one from the charities spoke up on anything and even when Hugh parry started blaming hostile patients in the style of wessely & esther only MERUK countered it at all.

 

What does this mean, Barry?

 

T'is slightly rude. Cannot recall when I first encountered the term, but was a long time back. Relates to someone getting cold feet, and a certain sphincter getting a bit twitchy. A half-crown was a coin of quite large diameter, whereas a sixpence was of quite small diameter ...

 

Still none the wiser. Can you explain it a bit more clearly?