There were not many ME/CFS research papers published in 2018 in comparison to many conditions

https://twitter.com/user/status/1079312535927562240

https://twitter.com/user/status/1079312538813239298

https://twitter.com/user/status/1079312541413724160

https://twitter.com/user/status/1079312544001609728

 

Some good tweets from Guthridge have been posted here. Is he a researcher?

 

I think he's a good person to follow on Twitter. He seems to read a lot of ME/CFS papers and posts interesting extracts from them on Twitter.

 

I believe this is his bio, listed at Monash University, Melbourne. Not sure if he is still working due to ME/CFS.
Link : https://research.monash.edu/en/persons/mark-guthridge

ETA : He also has an ME-pedia entry
Link : https://me-pedia.org/wiki/Mark_Guthridge

 

Ah, but once research is done to establish what we need to research, only then will we see ME research funded [NIH logic].

 

Disheartening. Guthridge is a good egg, though.

 

Sadly, there are still too many dump ME/CFS papers from Crawley & co to be able to keep up with.

 

Did you mean dumb or dump? Both apply.

 

Dump for me. I think that I could be using childhood slang that's thirty years out of date though. In the UK 'dumb' still has some associations with people who are unable to talk, although the US use of it is becoming more widespread.

 

Where did you get the idea that Mark was ill with ME/CFS? Those links suggest he is an active researcher.

 

Unfortunately I think the world isn’t shockable on ME , even if people hear this it will be filed under well it’s not that serious they get better, it’s still controversial , Some think it’s not real so what do they expect.
The media can compute it more if they have got past the above, which I think they have more in the USA than here.

Whilst the nhs and NICE is still pedaling behavioral management, it’s difficult to see a uk paper running headline “ME patients neglected” or “ concern that ME research isn’t progressing” as a scandal type story. It might be worth trying to get journalists to grasp both the numbers and severity and the varied outcomes in the context of this low level of progrsss in biomedical research. Government agencies are already aware but won’t do more unless there’s more outcry I don’t think.


Perhaps 2019 is the year to really act on funding. If an MP could hold up a big picture of this graph at the House of Commons debate it might be effective.

 

It is widespread, but a lot of ableist terms are. I think many people don't think a lot about the derivation of words.

One where I stumble is "lame" for "not very good" (ableist again) and I have hopefully solved my use of "tacky" (classist). I am almost there with not using "crazy" for "unexpected, wild, excessive, emotional, etc." (ableist again).

 

One point though, despite to us the progress painfully inadequate, in the last five years were miracles that were probably not envisaged by patients let alone those with vested interests in CFS remaining “unexplained”because unexplored.

The rituximab research nearly didn’t happen and some doubted it could, IOM report was much more patient friendly and revolutionary than expected IMO and NIH responded quickly ( but with low funding), Jen breas amazing unrest film awareness and missing millions patient movement and the involvement of dr Ron Davis plus the bitcoin windfall for that research team. Just imagine where we could have been if these things hadn’t happened, we would have been plodding on until 2020-25 with little change. I rather expect that was the hope of certain uk individuals and groups.