Channel 4 News 19 February 2024: Features Clare Norton, mother of Merryn Crofts

Great piece, makes a change! Thank you to Merryn’s mum and Maeve’s father for sharing their stories and to channel 4.

One thing I think the report said a million of people with long covid have the form that is similar to ME. Is 1 million correct? I thought for those with LC with similarities to ME the number was less?

Also anecdotally I am seeing a fair few with LC with similar presentation to ME making recoveries at one year mark, not all. I wonder is this because they got better management advice when first ill or there is some differences to ME even if overlap? Just musing on that.

 

As others have said, it all depends on the context. I picked up on the references to physical and not mental but within this presentation I thought nothing was out of step.

ME is physical in the sense that all disease is, including schizophrenia and depression if you like. The point being made, which is absolutely right, and came across, discussed in this straightforward way, is that it is not a 'belief of a disease'. Nor is it a condition that should be cared for by mental health teams with no interest and no access to life support in terms of parenteral nutrition or whatever.

I think Sonya Chowdhury has found a way to put it that has absolutely the right tone.

Doctors get into a terrible mess if they start arguing with each other about dualism and stuff and thank God that did not crop up. Patients and carers can overegg the physical versus mental side when arguing about the technical reasons why the PACE trial is rubbish. In that specific context the right argument is that the data show no effect, not that the approach was wrong by definition.

I found it very revealing that when you get together a small group of eloquent advocates who keep their cool you can get a very simple, undeniable story of what the problem is. Part of that is that ME is a real physical illness.

 

France Ryan, Guadian columnist, journalist, author and long-time ally of people with ME

https://twitter.com/user/status/1759956775183266078

 

I'm wary of being off-topic so happy if this is moved or deleted if so.

The 'rule of 7' is very effective for advertising/marketing as a heuristic for 'number of impressions/contacts'. But in the message/slogan/awareness part, and it might need to be gone about in a more nuanced/complex manner than straight repetition and be wary of various forms of 'fatigue'/switch off attention etc too.

So a programme of comms will think of timings in the way you have, but have planned what is appropriate for when vs what they are looking to achieve (and have coherent messaging perhaps across different items, but not necessarily be a case of exact repetition).

 

ME/CFS diagnoses traditionally take many years to obtain, by which time you implicitly haven't recovered early. It may even be that what we call "PVFS" is the self-limited/ "very" early recovering form. Perhaps as part of that there's a forme fruste before PEM becomes overt, or even contributes to disease persistence. A lot of patients got LC symptoms in a relatively short timeframe and have been visibly / loudly affected and it doesn't surprise me that many of those are recovering at 6, 12 or 24 months. (Just wish I was one of them!)

 

Good points @SNT Gatchaman, thanks for your thoughts.

 

Shh, you're upsetting Simon.

 

BPS have never compared us to real psychiatric disorders that have a physical basis like schizophrenia and depression. They have put us in a special category of “nothing wrong with you, just imagining you’re ill”. No one would say that to a person with a recognised psychiatric syndrome. Just us, in a special unique hell.

 

"Are you sure you don't just think you're delusional?"

 

129,000 views in 5 days.

 

The TV segment Channel 4 did is very well done, I'm grateful to the show's producers in addition to Clare Norton and Sean O'Neill for telling their childrens' stories.