BBC Radio Northampton phone-in with Charles Shepherd

This is all I know so far - anyone know more?

Programme: Helen Blaby
Station: BBC Radio Northampton
Datum: August 1, 2018
Time: 12:00
WebRadio: https://www.bbc.co.uk/programmes/p06cdjnv

Item: Charles Shepherd and a phone-in

 

https://twitter.com/user/status/1024572250559860736


Charles Shepherd just said that in addition to Merryn Crofts he was made aware of another person last week who had 'died from ME'..........it can't be Sofia (he must have been aware of her) so does anyone know who this other person is?

The presenter insists on using 'chronic fatigue' and the caller (Louise who seemed to favour CBT and is herself 'a therapist') does nothing to correct it.

One step forward two steps back.........

eta:
Louise Hunt therapy http://louisehunttherapy.co.uk/
based at Northampton Clinic
http://www.northamptonclinic.co.uk/

eta2: presenter was John Rose

 

It runs from about 1037 - 2108, then there's some conversation with Louise who claims to have benefited from CBT from about 2408 - 3045, then there's some odd mention of someone who phoned in from about 3615 - don't know if there was any more.

Louise does say that she still has the condition, that she was diagnosed with ME (towards the end) but earlier calls it chronic fatigue.

I think only Charles Shepherd is worth listening to.

 

There is a man who spoke up in the comment section in one of the papers that his wife also died of ME. I will see if I can find it.

 

Comment by Richard Senior in 2006 "Not, sadly, the first."

See the Editor’s note: The original version of this story stated that the UK case was apparently the first in the world. Our thanks to all the readers who pointed out earlier cases in the US and Australia.

Perhaps they have been contacted officially by Richard Senior or one of the other family members on these deaths. However, I would think they need it on the death certificate to be official as although I am certain there have been other deaths, without it listed as the cause or leading to the person's passing on the death certificate the death cannot be attributed to ME/CFS.

 

With all that has been happening over the last few years why do the BBC (and others) still bring up 'Yuppie flu'; I wish someone would say something like ' well if instead of trying to change the name to Chronic fatigue syndrome they had called it 'Chronic Flu syndrome' it might have been closer to reality of what it's like.......
I mean, if they are interviewing someone about Cerebral Palsy you don't hear them saying ' Oh yes, you used to be called spastics didn't you'.......
sorry, this has been really bugging me all afternoon.

 

Liked Dr Shepherd’s call. It covered quite a few points in a clear concise way.

 

Richard Senior has since passed away and Annabel Senior’s official cause of death is unfortunately not listed as ME. This is one my family have researched before.

We have also contacted ME Association regarding this comment as that is certainly not what they’ve communicated with us before. I feel like he should’ve clarified it more in the call.

 

Update: one of our contacts at ME Association has replied and is also unsure as to who was meant by Dr. Shepherd and has stated they will try to find out what was meant. It appears ME Association was unaware in general as this contact is someone at MEA who would have been notified of such important news. I will keep the thread posted as to what he says

 

Update: Well, I have to admit, I’m rather confused by the response given by Dr. Shepherd. He says he doesn’t want to give it any more publicity at the moment. From how he’s worded things, it appears unclear if it is very recent or not. He does not state whether an inquest has taken place etc, or whether it’s ME that is listed as official cause of death. Personally, I can’t believe he mentioned this so casually on a radio interview and now to state he doesn’t want to give it more publicity is slightly odd as people have heard it and are left wondering.

Judging from this response, I feel like he’s realised he shouldn’t have said it as it may be misleading and is now trying to prevent any further information being spread on it.

 

I understand your point Nellie but this is quite a serious thing to say on radio or within the media but then not elaborate on further, especially coming from someone who is being spoken to because of the position they hold within the community. If he did have brain fog then I hope he’s taking the time he needs for himself. However, if he didn’t and he just stated such a comment and then is refusing to discuss it further when questioned is irresponsible. As a family, we know the damage such a quote if not fully explained can cause and it is because of similar misinformation that we have had abuse directed at us from some within the community. Hopefully, it will become clear what was meant in the future

 

And if referring to the email, my apologies I thought you meant the interview, then this was an email that was forwarded to us by MEA that was sent to them from him. It appears everyone is slightly confused by today’s interview in what he stated. I hope one day he will be able to explain further as such news would be so very important to the community and helping ME be seen as the serious, neurological condition that we all know it to be

 

article in The Northern Echo:
"
New hope for sufferers of ME

RECENTLY a 21-year-old woman became only the second person in the UK to have a diagnosis of ME recorded as the cause of death. Family describe Merryn Crofts from Rochdale, who died in May 2017, as a “live wire” until she contracted the illness at 15, going from a bubbly young girl to a wheelchair in six months, and confined to her home within a year."
"
Cognitive Behavioural Therapy (CBT) and Graded Exercise Therapy (GET) are approved treatments and have been found to be very effective.

Both of these should be offered by professionals with a specific understanding of ME. Incorporating rest periods into the day also allows people to pace themselves and lessen the overwhelming fatigue.

This is different from sleeping during the day, which ideally should not be encouraged as it worsens night time insomnia.

Researchers in America have identified that people with ME may not metabolise nutrients as effectively as those without ME, and this may be a cause of or contribute to their symptoms.

A recently developed blood test was shown to be 84 per cent accurate when 50 patients with ME were compared with control individuals without the disease.

Many people report a degree of relief once they have a diagnosis, as it allows them to better understand their symptoms."

http://www.thenorthernecho.co.uk/news/16401152.new-hope-for-sufferers-of-myalgic-encephalomyelitis/

Didn't deserve its own thread, very odd article in that I can't see where the 'New Hope' is and it seems to be mostly a 'comment' taken from elsewhere (?)
another case of bad journalism.

 

We had no idea of this article until someone sent it us but we are very unhappy they’ve put Merryn in it and then proceeded to write what they did. We hope the community knows we had nothing to do with such a poor article xxx

 

Don't worry I don't think anyone in the community would think you did.

 

Thank you @Sly Saint and @NelliePledge

A comment on the link to the article itself states the person who wrote it is actually a GP. If that’s the case, it just further consolidates how awful the treatment pwme receive from many within the medical community is.

Me and my mum are sending you all gentle hugs, we are so sorry this person wrote such a dire article full of false facts, right before Severe ME Day tomorrow too