Trial By Error: What Now?

http://www.virology.ws/2020/03/18/trial-by-error-what-now/

 

Glad to hear you will continue fighting with us David, I am glad you are at home and hope you & yours stay well. As you say, there is always stuff to work on.

I think the PVFS implications of corona virus need to be further up the agenda, for sure.

Thanks!

 

Definitely. We know that many have suffered ongoing problems post viral infection. How many of those will develop ME and how many will end up suffering further at the hands of IAPT and the BPSers?

 

There is the angle of 'coronavirus could lead to more ME' which might be of interest to some publications.

 

I've wondered whether there is any value in "I became chronically ill after a viral infection - here are the things I wish I knew then" type of articles. Yes, it would be 'cashing in' on the raised interest but could also save many people from the possible pitfalls ahead of them.

 

If done responsibly - i.e. not feeding people's fear and panic- then I would view it as timely information rather than cashing in.

The tone would have to be carefully judged - in a way that was what I was thinking about in thread about reaching out to help those struggling with isolation:

https://www.s4me.info/threads/using-our-experience-to-help-deal-with-isolation.14108/

A kind of positive outreach to educate and also help remove the stereotypical image of the ME patient.

 

I've got a little project on the go at the moment if you would like to dabble. Trish, Barry and IW have been involved, and it hasn't yet damaged them beyond repair!

 

Please continue with your fundraising PwME need you.

 

Maybe something on the resilience PWME have developed through their experience of being isolated, home bound etc.? This would go a long way towards changing the public's image of us, especially as so many (worldwide) are now getting some personal experience of what it is like to have to adapt their lives to living this way, and also personally facing financial and job insecurity. It could be framed in a general way, not necessarily even mentioning the current coronavirus crisis. It would just make a timely read for the public, while helping our cause to overcome the 'secondary gain' narratives we have had to endure from certain quarters.

 

Sorry, I blundered! I misunderstood Adam's comment to mean that he was looking for something to take on as well, and was suggesting something for him. Of course, the theme was something for Dave, and I was too brainfogged to work that out. Doh!

Dave got in touch and I have enlightened him. My project is a cognitive test, along the lines of a 24 hour CPET, to test for ME. It's coming along, and seems promising, but is not really Dave's thing.

Muchly embarrassed!

 

I assumed your post was directed at David! It's a good idea, though. A cognitive test would be really useful, I think.

 

I agree. I don’t think the cognitive issues are taken account of, especially in disability/benefits assessments.
For PIP (UK) the assessors report for my application summarised that CFS includes cognitive problems, then they award me nothing on that part because “I am not diagnosed with a cognitive condition “ which I assume is dementia etc. I have specialist letters confirming cognitive impact.

So some test results could really help to demonstrate our problems. I am interested to see how you could do it!

(They also seem to think being degree educated means you can always communicate well, despite that predating the illness)

 

I have a Masters degree, gained with ME but before worsening. I had to forego the last 6 months of my benefit because I couldn't fill in any forms, having worsened. I get a pension now (thank goodness).

 

It would be great if this crisis killed off behavioural sciences. Asking people to change behaviour doesn't work. Wessely and Gerada media appearances have been flipant.

 

This whole issue IS behavioural change. The biggest and most centralised the world has ever seen.