Trial By Error: What Now?

Andy

Andy

Retired committee member
Like many or most, I don’t know what I’m supposed to be doing right now. I am “sheltering at home” in San Francisco, following the news, making way too many cups of coffee, chatting much more on the phone than usual, checking in with my 90-year-old mom in Manhattan, watching movies I’m not interested in watching, taking walks with Harold (the mutt) around the neighborhood while keeping several feet away from passersby. It’s like living in a Twilight Zone episode, for those old enough to remember that. (Or like living in a Black Mirror episode, for others.)

So…I had intended to be in England this month. My plan was to attend last week’s CMRC conference, conduct some interviews, post multiple blogs, meet with members of Parliament, see some fringe theater (American spelling intentional) in London, hang out with friends, and give a couple of presentations. Oh, and Berkeley had scheduled April as a crowdfunding month, so I was planning once again to seek support for my academic position at the Center for Global Public Health.

Well, things are obviously a bit different now.
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http://www.virology.ws/2020/03/18/trial-by-error-what-now/
 
Glad to hear that you will be crowdfunding again this year @dave30th.

It's an uncertain time, but the need to change things for people with ME and MUS continues, and if Covid-19 turns out to result in a post-viral fatigue syndrome in some people, then that need will only grow.
 
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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!
 
Glad you're sticking with us, @dave30th in this surreal world. I was going to suggest you try to get more articles published in mainstream media about ME, but at he moment, no one would be interested, I think. All the public's medical interest is on Covid-19. How about starting on writing a book?
 
Trish said:
Glad you're sticking with us, @dave30th in this surreal world. I was going to suggest you try to get more articles published in mainstream media about ME, but at he moment, no one would be interested, I think. All the public's medical interest is on Covid-19. How about starting on writing a book?
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There is the angle of 'coronavirus could lead to more ME' which might be of interest to some publications.
 
adambeyoncelowe said:
There is the angle of 'coronavirus could lead to more ME' which might be of interest to some publications.
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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.
 
Andy said:
Yes, it would be 'cashing in' on the raised interest but could also save many people from the possible pitfalls ahead of them.
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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.
 
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!
 
Graham said:
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!
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I assumed your post was directed at David! It's a good idea, though. A cognitive test would be really useful, I think.
 
adambeyoncelowe said:
I assumed your post was directed at David! It's a good idea, though. A cognitive test would be really useful, I think.
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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)
 
ProudActivist said:
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)
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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).
 
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