Questions about where ME/CFS is 'housed' at NIH

[SOC]

I think until we have some then I do not think ME/CFS will get a particular "home" and it makes more sense to have a trans-NIH working group lead by an IC which makes the most sense given the little understanding we do have: NINDS.

As long as the trans-NIH working group is lead by some sensible IC, I think we're good. NINDS is an excellent choice imo. Problems will arise if no one takes the lead and everyone thinks it's someone else's business to manage the ME/CFS program.

 

[searcher]

Cort got clear answers from Vicky Whittemore about where we are housed:
http://www.cortjohnson.org/blog/2015/11/07/nih-effort-chronic-fatigue-syndrome/

This reflects what NIH said in their press release and what @leokitten and @viggster have said, but there has been contradictory information in some news articles. I think people at NIH have differing opinions on what being "housed" at an Institute means. (And I am genuinely not being snarky!)

 

[RustyJ]

Cort got clear answers from Vicky Whittemore about where we are housed:
http://www.cortjohnson.org/blog/2015/11/07/nih-effort-chronic-fatigue-syndrome/

This reflects what NIH said in their press release and what @leokitten and @viggster have said, but there has been contradictory information in some news articles. I think people at NIH have differing opinions on what being "housed" at an Institute means. (And I am genuinely not being snarky!)

Reading that passage has left me underwhelmed to say the least. No funding and no oversight.

 

[SOC]

Reading that passage has left me underwhelmed to say the least. No funding and no oversight.

So, Rusty, you have a lot to say about what other countries are doing about ME/CFS, as we all do. How about sharing with us the political successes and failures regarding ME/CFS in your country?

 

[RustyJ]

So, Rusty, you have a lot to say about what other countries are doing about ME/CFS, as we all do. How about sharing with us the political successes and failures regarding ME/CFS in your country?

I would prefer to dwell on current international events, especially those of significance to Australia, at the moment as they are predominant. What happens to PACE and the NIH is extremely significant downstream for Australia. Historically though I have contributed to discussions regarding events of a uniquely domestic nature--if you are genuinely interested, perhaps you could do a search?

If you have a particular development in Australia you wish to discuss further, let me know. I'm sure I'll have an opinion on it.

Edit: Or I could tag you into the conversation if you like.

 

[Bob]

So, Rusty, you have a lot to say about what other countries are doing about ME/CFS, as we all do. How about sharing with us the political successes and failures regarding ME/CFS in your country?

I think we're allowed to have opinions about what's happening in other countries aren't we? Whether the events affect us or not. Our advocacy efforts cross borders. e.g. David Tuller is an American journalist writing about UK research issues. And I'm very grateful for it. SOC, you've taken an interest in the latest PACE developments, and you've been critical of the PACE research.

 

[SOC]

I think we're allowed to have opinions about what's happening in other countries aren't we? Whether the events affect us or not. Our advocacy efforts cross borders. e.g. David Tuller is an American journalist writing about UK research issues. And I'm very grateful for it. SOC, you've taken an interest in the latest PACE developments, and you've been critical of the PACE research.

Absolutely! That's why I said,

you have a lot to say about what other countries are doing about ME/CFS, as we all do

I want to hear from people in countries other than the US and the UK what is going on in their countries, good or bad, that we should be discussing. If nothing is going on in their country (which is bad), I think it's time that the citizens of inactive countries got involved in their own political process and start making things happen. The rest of us will help, if discussion here is any indication.

Sitting around criticizing the neighbors when your own backyard needs cleaning isn't good form. It's my impression that the ME community would be happy to have a neighborhood clean-up party in which we all help each other clean up our yards. Some yards need more work than others, but we'll all pitch in. The neighborhood doesn't get all spiffed up, though, if everyone only focuses on one or two yards and doesn't admit that their own yard needs some work and get to it.

Sure, let's talk about what we can do to clean up Bob's yard, or whether SOC is doing the best she can at cleaning her yard, but it's not just Bob's or SOC's mess. Other yards are just as bad or worse. The owners of those yards need to step up and get to work on their own problems, not just sit around talking about Bob's and SOC's yards. Look at your own yard, too. Get started on the clean up. Make a list of what you need help with and bring it to the community meeting. We'll pitch in, I'm sure of it, if we know what you need help with.

 

[Valentijn]

I think we're allowed to have opinions about what's happening in other countries aren't we? Whether the events affect us or not. Our advocacy efforts cross borders. e.g. David Tuller is an American journalist writing about UK research issues. And I'm very grateful for it.

I think the bigger problem is focusing on attacking imperfect advocacy efforts, instead of focusing on positive advocacy. People are working hard to advocate in various ways. It's counterproductive to undermine both the advocacy and the advocates, simply because that particularly advocacy effort involves a process which we don't love 100%.

If someone has a huge problem with CMRC, their time would be better spent figuring out how to fix it, how to (realistically) replace it with something better, or an alternative form of advocacy which accomplishes their own goals.

 

[Bob]

Sitting around criticizing the neighbors when your own backyard needs cleaning isn't good form.

You might be right, but we all do it.

@SOC, I missed that bit of text that you highlighted, but I still think you're being unfair. Just because we don't hear about advocacy efforts happening in some countries, doesn't mean there aren't efforts going on. I know of community efforts in Norway, Netherlands, Germany, Australia, New Zealand, Ireland, Canada and Spain (and I've probably forgotten many). The Microbe Discovery project website was translated by volunteers into a number of languages including Japanese, Mandarin, Dutch and German. So there are patients all over the globe who get involved in positive efforts to help others.

If you intended to make the point that you'd like to see more constructive comments towards the efforts going on in the USA, and the outcomes that we are witnessing, then I think that's a fair opinion.

 

[SOC]

Just because we don't hear about advocacy efforts happening in some countries, doesn't mean there aren't efforts going on.

Again, I think you may have misread me. I said:

I want to hear from people in countries other than the US and the UK what is going on in their countries, good or bad, that we should be discussing.

I didn't say things weren't happening. I said we need to hear about them so that we can discuss them and help, if possible. It's unlikely I'm going to know about advocacy efforts in Australia or Austria or Japan if members from those countries don't bring those efforts to our attention. As you so rightly pointed out, I can criticize or compliment the Australian government and charity efforts as well as I can criticize or compliment my own.

We can't keep focusing on what's going on in only two countries. It's a big world. ME is a big problem needing more funding and political will than one or two countries can manage. How much is Australia or France or Japan or Norway spending per capita on ME/CFS research? Where is that funding going? Can we use any particular country as a model (Norway?) for others in terms of per capita spending or quality of research? Why aren't there petitions for patients worldwide to sign asking the Australian or Indian governments for more funding for ME/CFS research? Why aren't we asking where ME/CFS is housed in the Australian or German equivalents of the NIH?

We need these things to happen and it's up to the citizens of those countries to start the ball rolling. Tell us what's going on in your country. Let us know how we can help to get more funding for ME/CFS out of your government coffers. Did your governmental medical agency put ME/CFS under the jurisdiction of the psychiatric branch? That needs changing. But we don't know about it if you're too caught up in criticizing the UK and US and not taking the time to address your own country's problems or telling us how we can help. Even in the midst of a PEM episode I could manage to sign several petitions a day asking different governments for something. Our twitterers could easily retweet anything useful about any country if only the citizens of that country informed us of the issues and put up a relevant tweet.

We need to stop focusing all our criticism and compliments on a couple of countries and start looking at the bigger picture. Things are happening that we should be able to leverage into action in other countries (IOM and P2P reports, the impending fall of PACE, changes in the NIH, excellent research in the US, Norway, and Australia). It's up to the citizens of those other countries to get things started in that direction and to share those efforts with us so that we can participate, just as they are participating in what in happening in the UK and the US.

Show us some petitions, tweet something we can retweet, post a letter we can copy and send to your politicians. Ask for help if you don't know how to address a particular problem in your country. Brag if your country is doing something well so that we can use it as an example to encourage (or shame) other countries into better policies.

It's not all about the NIH and PACE. It's about all PWME throughout the world and what their governments and charities are doing for them (and the rest of the world). If your country is currently doing more harm to patients worldwide than good, we'll be happy to pile on, as the UK has seen. If your country is doing more good than harm, we'll be more than happy to compliment and encourage it. (Big thank you to Norway!) But we can't do it if you don't tell us what's going on and how we can participate.

 

[Bob]

@SOC, thanks for clarification

 

[SOC]

@SOC, thanks for clarification

Sorry it needed clarification. I am, unfortunately, in a PEM episode and I guess I was originally trying to say in too few words something that evidently takes a LOT of words to make clear.

 

[Bob]

Sorry it needed clarification. I am, unfortunately, in a PEM episode and I guess I was originally trying to say in too few words something that evidently takes a LOT of words to make clear.

Well, I misunderstood you and mis-read your posts, and I don't think you should take all the blame for that. If we stuck our two brains together they might function like half a brain! Anyway, I'm glad I mis-read your posts because I thought you made interesting points in response to me. Thanku.