Whitney Dafoe Updates

Whitney has two messages for the m.e. community, as reported by Jen



the above shows as a blank square when js is turned off. it is xxxhttps://medium.com/@jenbrea/meeting-whitney-cf179fdad0a9


@JenB

 

And those two messages are:

 

Why is calling it an invisible disease bad PR?

 

I don't think it is. When the tests that a GP will run don't show anything abnormal, as Ron himself pointed out at the IiME conference, then it is effectively an invisible disease and should be described as one.

 

There are many other diseases that are invisible that suffer from stigma by the general public.

I’m not sure why it is bad PR? That is around 10% of the USA population according to this site
https://www.disabled-world.com/disability/types/invisible/


I think it’s far more credible to link to this sort of charitable activity than generic movements such as race and gender equality.

Discrimination against disability is far more clear cut and just as abhorrent.

Perhaps he is concerned about the connection with mental health awareness?

 

He's saying that ME does have clear signs. It is only invisible if you don't care to look.

 

I get his point. It can be visible, but then so can MS or diabetes. For the most part, however, you can't see them.

I think the 'invisible disabilities' message is quite clear and has changed the way a lot of people think about disability. I wouldn't want to undo that hard work and increase the already-too-high numbers of people challenged for using disabled parking bays or disabled toilets by people who don't know better.

 

I think the use of ‘invisible’ is all in the context. It’s one of the points where we can band together with other groups for broader advocacy efforts.

For instance, the Norwegian Arthritis Association had a big media campaign this year about living with an invisible illness. It led to a series of articles across several national and local media outlets on living with all sorts of invisible illnesses, not just arthritis. It was made a lot clearer that this is the reality for a big portion of the population, not just a few forgotten people.

I do agree however that it’s not an invisible illness in every sense, and that we should be careful how and when we use the concept.

 

Yes, exactly. We also are not invisible. Ignored, but not invisible.

 

http://thekafkapandemic.blogspot.com/2012/09/the-word-invisible-is-problematic-in.html

 

Another thing is, as a community we have more power than we think. We are millions of plp, the day we decide to trend on tweeter, Facebook.... we can make noise and create havoc w out message.
So if nothing else make sure to create accounts and have them ready for action. You can tweeter #millionissing on the day if nothing else, we can help the word to trend and those who can write more, get meaaage out.
Or retweet’s a good message w one click, or a like button....

 

I’m happy with “can’ be an invisible illness l I just get irritated when people assert it is and we Look fine. Obviously the severely ill sometimes DO look exactly that so to say “but you look fine” would be silly but even when mild-moderate the Main reason my family believed me was because of the ghastly facial pallor Ramsey wrote of which was my typical shade, more so when I exerted, if I said I’m starting to feel ill I’d visibly be draining too and people COULD see it. I know this isn’t everybody’s experience by any means but neither is “I look so well but feel so ill” either which is sometimes put about as the face of our illness invisible.

 

I think another point is the socially acceptable discrimination that is metered out to people with invisible illnesses because people believe it is excusable.

My condition at it’s worse was very obvious (walked/shuffled with a strange gait, was very cognitively challenged, had the strange drained pallor etc etc). That didn’t stop my employer deciding these things weren’t important.

I had to get a witness statement from my colleague to spell these things out at a disciplinary on my return to work because my boss was making out that this was not something she had noticed and was arguing it was attitude driving poor performance before I was signed off from work (even though she was kept abreast of all the tests and my diagnosis).

I wonder whether if I was more permanently visibly disabled for all to see that this would have lessened her bad behaviour?.

The invisible illness movement is about making people realise the hidden disabling nature of our illnesses and that being disabled affects more people than most are aware of....in short it’s about asserting our rights. A lot of people are discriminatory by nature and need the law to keep them in check. My ex-employer needed repeated reminders of their obligations under the equality act both at my performance disciplinary, reasonable adjustments, my return to work and my subsequent grievance/ACAS meetings. I had to fight too hard to assert my rights and eventually lost.

I would like to see more campaigning for all hidden/invisible illnesses and ME/CFS linked much more strongly with disability awareness campaigns.

It’s only when people feel that it is no longer socially acceptable to discriminate that we will see overall change.

 

This post has been copied and following posts moved from this thread:
Dr Ron Davis Gives Updates on ME/CFS research - September 2019 onwards
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An update on current research posted on Whitney's Facebook page:

- Rahim Esfandyarpour has recruited new grad students to work on the nanoneedle, this "will speed things up considerably"
- Ron Davis is "working on a way to prevent the allergic reaction [from copaxone, the MS drug] but still provide the benefit"
- Ron Davis "will be conducting clinical trials on these drugs [copaxone, SS31, suramine]" but urges patients not to try them on their own
- The new "board design [for the nanoneedle] was sent to both China and US manufacturers to fabricate", but they're shut down, delays are unknown.
- Ron Davis has "looked into mycotoxins" but "says the current tests are not very sensitive or accurate and may give false results which isn't useful", so he's "develop[ing] a more sensitive and accurate test and will then start checking patients"

 

Sorry to be cynical, but why is Whitney being used to convey this information? He says it's "top secret inside info", but I highly doubt he is sharing it without Ron's permission. So why is OMF using Whitney to communicate this rather than doing it themselves?

 

I see your point... but I have an issue with OMF referring to Ron Davis as 'Superman' (if there was indeed OMF involvement with this post - but it's hard to imagine that there wasn't).

 

I agree. I would also be concerned with accuracy - Whitney is still(?) severely ill, and those of us less ill than him can struggle to comprehend complex issues, let alone communicate them accurately to a wider audience. Until it comes out as an official OMF update, I'm treating this as Whitney's interpretation of what his Dad may, or may not, have said to him.