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.
 
Robert 1973 said:
In many cases type 2 diabetes, and many other illness which are not psychological, can be effectively treated with psychological and/or behavioural interventions. Unfortunately, ME is not one of them.
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A bit of a sad fact: Diabetes patients that can be treated with behavioral interventions experience less stigma than those that can't. Regardless if the "can't" group are diabetes type 2 or type 1's (for those unfamiliar, type 1 diabetes is autoimmune and patients are considered to be without fault for getting it. But since a lot of people think diabetes = lazy with a bad diet, this bleeds into attitudes towards type 1 patients because they must have terrible lifestyles when they are in need of medication).

Agree with others that this was good to see.
 
DigitalDrifter said:
The last guy in the video says that ME is a real physical illness, I thought that was considered politically incorrect?
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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.
 
Solstice said:
ME Awareness Day is very important but I think it's more important to just have constant reminders throughout the year about our plight. I don't know if the science behind spaced repetition holds up, but if it does it would seem to me that the best way to really make knowledge about us stick is to have a reminder every couple of weeks.
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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).
 
anniekim said:
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?
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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!)
 
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.
 
Robert 1973 said:
These arguments are not difficult to get right, but it can be hard to use the correct language and get the right messages across with limited time in the general media for audiences who are not familiar with the issues.
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It requires a certain amount of background knowledge to grasp the problem. Both the technical stuff and the broader socio-political history of how it has been (mis)handled and developed. No way round that.
Jonathan Edwards said:
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.
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This is a critical part of it. But also fair to say that it takes a multitude of approaches to solve complex, multi-faceted, and deeply entrenched problems like this. Throwing the occasional well aimed rhetorical bomb to shake things up is usually also a helpful part of the process along the way.
 
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