Dare to hope... what amazingly great thing might happen in S4ME's first year?

For anyone else who took as long as me to get this:

 

@Esther12
Is there anything one can do actively? I came across people in a German ME forum who didn't know what PACE is

If I look to UK (or even US) I get a bit sad because there is so much going on there. (A happy sad, because I am happy for you and sad for me )I don't know how this can be achieved in Germany. Ideas would be welcome.

 

I don't know.

Engaging people in discussion about these things? Linking to some of the good summaries that have been done (eg Tuller's)? Making it clear why it really matters to how patients are treated around the world? And making it clear that having patients be well informed, and able to discuss these matters in a way that cannot be dismissed by doctors, is a powerful tool for helping them take control of how they're treated?

It could be that there are less good reading materials for those that do not read English?

 

Hi @Esther12, thanks

Maybe NONE?! Okay, more realistic: almost none in Germany. Just my impression. All I learned was from an English forum.
Papers are in English. I shall search for German material.

 

Perhaps this is something that S4ME can, perhaps not actively organise, but hopefully facilitate? Translations of all important documents about ME into different languages?

 

Google translate often does a passable job. We could just host Google translations (maybe with some voluntary tinkering by anyone who speaks the language), so that they might turn up when people do searchers in other languages.

 

Positive outcome from Rituximab/cyclo trials
Said positive outcme to be printed on front pages of national newspapers

Uk Rituximab study to begin

Norwich centre of excellence to be up and running

Ron Davis/OMF to have a big breakthrough

For me personally - just to get through the next year without anything terrible happening and stay alive.

Less realistic- for someone involved in research to finally tell me why they think a subset of us has MCAS and EDS as well or if they think we dont have M.E or whatever, but i just want someone to tell me what they think about this (whenever i get the opportunity i ask this q but no one ever has a stab at it)

Family studies to get underway in earnest

People who have had long remissions to be studied.

 

For no good reason at all, I've been feeling less hopeful about rituximab. I think that the lack of an army of positive anecdotes (although there have been some) has affected me.

That does seem our best bet for an imminent treatment though. It would be so amazing if a third of us were able to get something close to recovered. Anyone want to pool risk?: those who recover have to do the washing-up for those who do not.

 

I'll try that in a "small circle", but I'm not sure whether the forum I think about will be open. They are pretty "pro psycho stuff", even in the ME subforum. I was also thinking about something "bigger", like writing to officials. This will need some pre-organization.

 

Wouldnt that be great - to have a whole army of well advocates with M.E?

 

It would certainly complicate Wesely's retirement plans!

 

I often speak of the "innocently uninformed", meaning genuinely decent people who do not have ME, and simply do not understand the issues. But it's also likely that a lot of PwME are themselves innocently uninformed, not realising just how very badly the the establishment is set against them.

 

@Barry
I was meaning people with ME. The general population will most often lack the interest. That's understandable.

I'm gonna give it a try in a German speaking forum. Let's see

 

When authority figures are trying to present themselves as trustworthy and caring, it can take effort to spot all the problems.

There's also a separate danger of people only discussing these issues in an echo chamber where everyone speak on the assumption that these authority figures have been shown to be untrustworthy.

For people who've been interested, there have been plenty of examples to see of authority figures trying to dismiss patient concerns, but for patients not paying attention, they can end up making points/arguments that really fail to move things forward, and can

 

I would like to see the researchers listen to PwME (and their doctors). I feel there is a knowledge gap that needs to be closed. If this forum can open up a dialogue, then the patients could teach the researchers, and we could speed things. Would be nice to get the repurposed meds into phase 3 FDA trials ASAP.

 

I would assume the people who have significantly improved and resumed their lives would not want to look back.

I know a few PwME who are purposely uninformed. They prefer to not think about it. I try to tell them about the latest research & advocacy, but they don’t seem interested.

This illness has challenged me on so many levels. (In the U.S.) It highlights what’s wrong with the public system of funding research, shows a lack of collaboration between patients and researchers, shows how ridiculously expensive it is to get FDA drugs approved, how health insurance screwed up our once top notch health care system, how medical school does not effectively train doctors, how disability benefits are difficult to achieve for a sick person, how grossly ignorant some people are re understanding what it is like to live with a chronic illness.

 

This is morally wrong and sad that any of us feel we need to stay quiet. It reminds me of “children should be seen but not heard”.

 

I wish we could somehow make this forum more accessible to people who don't feel confident writing in English. Like allowing people to post in their own language and to call for a translator from amongst the membership? (short messages, obviously).

 

I would be willing to translate (as is possible for me)

 

We don't have rules regarding language, and I think it's fine for people to post in something other than English if they're more comfortable doing that. People can use Google Translate to get a decent understanding of what's been said.

Though proper translations of library and help pages might be useful.