Whitney Dafoe Updates

That's a great photo. So simple, yet says so much.

Even after all these years of ME, I can't begin to imagine what it's like to be severely ill. Almost never feeling the rain or the wind, not being able to experience the freedom of floating in a pool of water?

I hope there is some hope, and soon.
 
I have recently seen some disturbing public attacks on Instagram attempting to publicly shame and hurt fellow ME/CFS patients. And I have seen similar attacks all around social media and ME/CFS forums over the years. Even when you disagree with another ME/CFS patient, public or private attacks or any kind of attempt to hurt someone who is already suffering so much is not ok.
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It’s worth noting that Whitney wrote a near-identical blog post to this a couple years ago in the wake of a major legal defeat for women’s reproductive freedom in America. He was not a fan of the intra-community conflict that followed and similarly exhorted everyone to stop arguing and focus on what’s really important (to Whitney). So it wouldn’t surprise me if the “attacks” he’s alluding to here are not, in fact, senseless attacks but conflict over values.
 
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I have some sympathy for Whitney, in that as a very sick person probably only able to read a little on social media, the last thing he would want is to be confronted with is people attacking each other.

However, as a reader of his post, I had what I think is a natural reaction of feeling told off for something I didn't do. Perhaps it would help if he gave some indication of what the disagreement was about, so his criticism doesn't come across as a sweeping criticism of all of us.
 
I’m guessing it has to do with this— the Long Covid Action Project People— @rvallee?

https://www.s4me.info/threads/1-18-...n-pensions-committee.36940/page-2#post-512389

https://twitter.com/user/status/1749792595461497170



that their “direct action” IS the purpose of the org: attacking other LC orgs, attempting to fracture & disable solidarity about LC.


https://twitter.com/user/status/1749411007645044917


Absolute solidarity with all the members of the LC community who have been attacked and harrassed by the LCAP crew. Their behaviour is completely unacceptable and needs calling out, repeatedly and unequivocally.
 
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Jaybee00 said:
I’m guessing it has to do with this— the Long Covid Action Project People— @rvallee?
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I think the problem as Trish says is that we don't know anything about which disagreement this is referring to. Is it the useless and often typically attacking and harassing "LC vs ME" debate that has been constructed by some people on Twitter which you are refering to, is it the Dragons’ Den story and whether this person has/had ME or is it something else entirely?
 
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After seeing how the likes of Wessely and Crawley have constructed narratives of attacks and harrassment I'm very reluctant to take such claims at face value from anyone if no specific evidence is produced. Having ME doesn't give you the right not to be disagreed with, or to label people who disagree with you as bullies trying to hurt you. So until Whitney wants to tell us what he's referring to (a link would do) then I haven't a clue what his vague reference is referring to and it's not my job to go and find out. Maybe those he's talking about know what he means and his message is just meant for them. I hope he isn't addressing everybody with ME, because that would be somewhat annoying.
 
Whitney said clearly it was about ME/CFS and on instagram.

I did actually visit today because of the UK Acu Seeds / Giselle Boxer ongoing frenzy. Charles Shepherd has criticised her for blaming patients for being "negative" (past TV appearance) and comments from her instagram has surfaced where she is saying that she was bedbound for only 4 weeks and had a physio encourage her to do GET... which is again a treatment known to harm most people and doesn't support her claims to have cured herself with ear seeds.

I doubt this is what he meant but I have noticed Whitney is very uncomfortable with conflict and assertiveness even.

I have no energy or interest in personal criticisms but calling out quacks and frauds - whether they wear white coats or not - is something I see as protecting others from potentially dangerous treatments.

It becomes so exhausting to see yet another person claiming to have "healed themselves" but talking in a way that's actually very hurtful and lacks any compassion towards others.
 
Moved posts

MeSci said:
Whitney has put on weight!
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Someone asked him about this on Twitter and he replied that it wasn’t weight, but water retention. I really hope he is allright and they can get to the bottom of what’s going on.

I was glad to see the fundraiser reached its target. Ron’s message had a very positive tone, may he and his team continue to make headway for all our sakes :heart:
 
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CorAnd said:
Someone asked him about this on Twitter and he replied that it wasn’t weight, but water retention. I really hope he is allright and they can get to the bottom of what’s going on.

I was glad to see the fundraiser reached its target. Ron’s message had a very positive tone, may he and his team continue to make headway for all our sakes :heart:
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Oh that’s a shame. I was hoping this was a good sign.
 
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