For Muffin & everyone - what are we doing & what are we doing next.

[V99]

We have been discussing various minor voices who shout abuse across the web at all of us, we have discussed how we think and feel about these people. This thread is to be used for fighting back. Not against those insignificant individuals, but the real adversaries. As Muffin put it, the CDC, Wessely/White, Congress, NHS, them guys.

Post ideas, tell everyone what you are doing. Inspire and be inspired. :victory:

 

[V99]

I'm changing wikipedia, I'm contacting my colleagues in TV and informing them. I'm passing information around the web, and trying to get some of it in the right hands, where it may do some good. I give money to various groups. I want you all to know you are not alone, that there is hope, we have hope. x

 

[muffin]

Good idea V99. We need a list and we need to put on that list what we are doing/going to do.

In the past couple of years, I have sent a ton of emails to the head of the CDC, several other people in senior positions at the CDC and also the head idiot at Emory Mind-Body where he put his foot into his mouth and I posted the emails (back/forth) here on Cort's site; emails to DHHS; emails to several members of Congress; complained and complained to the CFSAC people such that Wanda finally called me to get me to knock it off; asked in writing at least three times that the CDC/CFS/Reeves and Emory University MIND-BODY Program and ABT Associates be investigated for possible contract illegallities -- to all the Inspector Generals I could think of and the GAO (three times to GAO and getting a response from them that they don't do individually requested investigations to which I went to their front page and copied/pasted that in fact they did (no response from that); sent a chunk of change to WPI; responded to every stupid blog/website that was posted here in order to counter idiot comments and show that we are a large and united group who will not put up with nasty shots at us anymore; made it a point to the VA that Dr. Borgini, of the CFIDS Jihadists comment, was informed of his article so that they could deal with him as they saw fit; requested from the Brits that document that has been locked up for 83 years (requested it for both me and my husband) so that they knew WE all were aware of this document and the damaging info that was contained within it; send emails to the AP people, several major newspapers, and even PEOPLE magazine on topics related to CFIDS and always cite Hilary Johnson's Oslersweb.com so that they get a great and fast summary of the history of CFIDS and the CDC (and the first retrovirus found by Dr. Elaine Defrietas); and the list of my bothering of people and organziations goes on and on.

I think we do need to have the CDC/CFS/Reeves et al investigated fully by the Feds and Congress. We need more and better media coverage on us so that the long-term damage to our reputations is countered. We also need to BEAT ON the various Federal agencies to get them to re-route money for CFIDS research and that means nailing DHHS and Congress (again). But really, we need a lot more money for real research in so many areas of CFIDS (and not just XMRV) so that we don't leave a stone unturned. We can not just hope and pray that XMRV is "THE CAUSE" of CFIDS and then the antivirals will follow in quick order. I think CFIDS is far too complicated for it to be just one major virus. I would bet XMRV is involved, but to what degree I don't know. So we have to keep at all other areas of research on CFIDS.

Partially because of XMRV finding, partially because after 16 miserable years of CFIDS and a lost life, partially because I have a niece and a nephew and I believe that genetics also works into CFIDS (per Dr. Kerr and others), and partially because I just don't care anymore who I bother, offend, scream and carry on at (must be the damage to my brain) I just keep emailing and emailing to anyone that strikes me as someone that needs to be informed or complained to.

V99: Your turn! Others!!!????

 

[V99]

Muffin your amazing!!! Loads of ideas. I will post more tomorrow, really have to sleep now.

Just want to add that if you cannot do anything mentioned here, that's ok, you cannot if you are too sick, but stay hopeful these things are happening, the message is getting out.

 

[muffin]

Oh, the list is what I have done in the past several years. But I do plan on going after the CDC/CFS/Reeves et al in every possible manner. I also want a full investigation by our US Congress.

NOW, I also fervently believe that we all need to assist eachother in dealing with eachothe's governments and health organizations. The Brits, Canadians, Australians, etc. shoulld be involved in US CFIDS issues. The US folks should be fighting on behalf of our British friends to get RID of Weasel and others (that is beyond criminal to me what they have done to our Brit friends). I think it does NOT matter anymore about the country lines with regards to CFIDS/ME research, funding, changes in thinking, etc. etc. Yup, I have sent emals to 10 Downing st. And I will do it again and again. It's that united front thing that we all have to do. If we look at the AID/HIV fight, they really pulled out the stops and got the billions of research funding that they needed and still get! So we need to follow their lead and do much of what they have done for CFIDS.

 

[Mark]

Suggestions:

1. Make a list of jobs in the first post. Put everyone's ideas in. Stick to the important things, list what you think should be the priorities in order, keep editing it as your thoughts evolve. Everyone keep updating their own list. Orientate your own actions round your own and the group's priorities. In your activism try to balance what you think is important with what the majority of the group think; try to do some of both. Use emoticons to convey opinion of tasks and indicate pledged/completed work.

2. Share out jobs. Pledge to do very small tasks. Bit by bit. Specific, Measurable, Achievable, Realistic, Timebound. Adjust the rules of SMARTness to adapt to fogginess and relapses.

3. Join the dots smartly. Start thinking about how the campaign elements link up and when it might be best to wait until quality has been reviewed and elements are ready before triggering certain actions.


I'll just state one of my top priorities for an early task: create a thread with contact details of everyone to write to, or write about, in a standard format. There should be a starting point in advocacy. A similar task is gathering the best documents, resources, threads, member comments and sources of info together.

 

[muffin]

A repository of FAQs on CFIDS/XMRV was started

A repository of FAQs on CFIDS/XMRV was started so that the forum experts didn't have to keep explaining and defending so some smart person set up an FAQ for all of us to use. I also suggested that this very smart idea be the place that we draw good, solid, well researched/cited information from when we post to other websites/blogs, and when we write emails, letter, etc.

So that part has already been started and the real CFID experts here have taken on that critical task. And I believe it is super critical as we can just cut/paste and not have to think and re-write that which has already been written, and written extremely well.

Didn't someone start a list of contacts? Or was that an idea thrown out there? At some point I think I put a post of the contacts for Congress, GAO, Inspector Generals (IGs) who do the internal investigations for the orgs, CDC Dr. Frieden's email, and some others - IF I recall correctly. Which, with my very very badly damaged brain I just can't remember.

But I think we all know that crying to eachother is not doing us any good. We must complain in large numbers to those in control, in power and with the money. And we have to hit and keep hitting the media with our own comments, editorials, etc. We can't just leave this stuff up to the CAA as they don't always jump on things as they should (not knocking them, but we must be more proactive since we are the sick/disabled ones).

I will go find my list of contacts including the newspaper journalist names and the rest of the government names/emails.

Thirty years is just too long for this to have happened to a very large group of people. It tells me that someone (groups) have done this to us for very serious reasons. Not going X-Files on you all now, but...

 

[Marco]

Just a suggestion - but public perceptions are a big drag on us but could become a major source of momentum if played well.

Are you aware of any 'Ask the Doctor' features on local or national TV, Radio, Print?

Could those of us who are able, bombard them with stupid questions (or maybe not so stupid - but I don't expect a 'celebrity' MD/GP to have any meaningful responses) as an in to spreading the word about XMRV?

Like - Dear doctor whatever :

I have had ME/CFS for 10 years. Given that there is strong evidence now that ME/CFS is caused by a potentially deadly retovirus, should I donate blood/stay indoors/avoid breathing on people etc?

I suffer from constant fatigue and insomnia - what can I do? - Regardless of the answer you could always follow up with - but I've tested positive for the retrovirus XMRV - do you really think counting sheep will work for me?

I have chronic fatigue (sic) and have been referred for a course of CBT and graded exercise. Is this wise if I'm one of the estimated 4% of the population infected with a deadly retovirus?

You get the general idea.

For live media that might pre-vet questioners you can always lead with an innocuous question and follow up with the killer.

Just a thought.

 

[Marco]

Oh and another suggestion.

Anyone here members of other online fora not related to ME but for social networking hobbies etc?

Without making a pain of ourselves its entirely possible to open a discussion on ME, XMRV, the blood supply, healthcare generally etc as most fora have a general discussion section.

Spread the word and educate!

 

[justinreilly]

Muffin, Mark, V99:

your advocacy and ideas are very impressive. I like Mark's ideas about thread structure. once that's done, this thread should be made a permanently highlighted one at the top of the subforum. Keep going you guys and thanks for all you do!!

 

[Mark]

Hi all. Just very quick thoughts today... I am thinking particularly about starting points and foundations, and remembering all those months ago when Marco and I first said "hi", Marco if you think back, did we not fail to achieve what we mentioned there - am I remembering right that we identified as top priority investigating and doing FOIs and identifying clearly and publicly that these XMRV "replications" were about to fail, and said we needed to explain why, before they published. But we didn't do that. Wessely's was an interesting one, because nobody even knew it was happening until it published, unlike all the others that were announced (and some then abandoned after Wessely/McClure's appeared out of the blue), so we couldn't have got on top of that anyway - but we didn't have counter-information ready as we had intended. Anyway that's my recollection of the past attempts which seem similar to me.

The problems being, that we each of us drift in and out and struggle to maintain the necessary focus on an activity. Which is where groups come in, where we can each 'pick up the baton' and are stronger than the sum of our parts.

So my suggestion is to form a forum group - a much-underused forum feature - whose name can define what we agree on, which I think is supporting the WPI science against disinformation (but I'm sure we share wider aims so considering those too would make sense). Doing so honestly, and dealing with everything from valid critique of the science to malicious lies and slurs, and making that high-quality information widely available, would be my starting point.

Trying to hold things together on threads, or through vague affiliation, hasn't always seemed to work. The earlier expectation that everyone on this forum held, and would continue to hold, the same convictions re:WPI, was clearly an illusion. Hence while some have responded by wanting their own defined group elsewhere with certain common assumptions in common, whereas we prefer to remain 'inside', I think we still have the same need to define our parameters so that we have a space where we can avoid the distraction of pointless arguments about whether we should even be doing what we are doing.

So all we need know is a name, and whoever wants to set it up can do so, so can I suggest a quick discussion about name and then set it up?

PS: personal plea, which applies generally as well: if I drift away from this because I don't have time to explore all the threads on multiple subjects in detail, please PM me to remind me...

 

[Mark]

PS: In case you haven't seen this thread:
http://www.forums.aboutmecfs.org/showthread.php?5662-WPI-and-XMRV-Myths-Facts-Questions-and-Opinions

then you may have something to contribute to that.

muffin: Could you post links there to the resources you mention please?

 

[Marco]

Hi Mark

Your recollections about the need to predict the results of the 'failed' XMRV studies is spot on. We didn't achieve it, possibly couldn't for the reasons outlined, but also as I recall we thought it would be better if the charities and advocacy groups took on this policing role, which they failed to do despite (probably inadequate) prodding from some folks here.

I've seen the thread and agree its better to have this pre-prepared briefing material at hand - not only in relation to XMRV.

With the greatest respect however to Muffin and others who have been working tirelessly, lobbying all and sundry, with any influence or in positions of power, to help our cause, I'm sure they are fed up to the back teeth with being ignored, stonewalled and possibly even insulted and abused for fighting their corner.

While my suggestions might have seemed flippant, there is a serious point. Politicians, bureacrats etc are masters of evasion and stonewalling. Many are trained to do it - witness the performance of the BP CEO in front of the Congressional Committee! It is all too easy to ignore individual patients, patient advocates etc and the more frustrated and persistent you get, the easier it is to have you dimissed as a crank.

However, imagine the effect that a open and honest discussion of XMRV on a prime time network programme would have on public opinion and their perception of ME/CFS and the risks posed to the general public.

Your average politician, bureacrat or whatever would find it much more uncomfortable to be facing 10,000 irate callers demanding to know what they are going to do about the risks.

OK, raising the issue in a local paper, radio station or on a non-ME/CFS web forum might not have quite the same impact, but every single mind changed is a small victory .. and its something we can all do individually without the need for organisation.

Just my thoughts and not incompatible with others' ideas for more organised actions.

 

[Frank]

We could give you guys a seperate area on this forum if you like. There is the possibility to have a private advocacy group, maybe that will be a good start? (On top of the page, click community and in the drop down menu -> groups)

 

[Mark]

The group Frank mentioned is what I'm suggesting. The question is over defining a name, and the core principles.

Glad you remember things the same way as I do Marco. My recollection as to why it didn't happen, and why the other things didn't happen, was that we all got sidetracked by arguments about trolls etc. Somehow we failed to organise. That's why I'm concerned that we organise more effectively.

Also Marco's points about not being listened to are pretty relevant. Whether you could realistically get any media coverage such as you describe in the UK I don't know. It's hardly a "free press"...

I don't have any easy answers, but the themes that I keep coming back to are

- the need for clear, simple, well-presented core information aimed at patients and also the general public (the latter seems particularly lacking). I mean campaigning information such as the lack of research funding, rather than information about symptoms etc.

- the need to link up with other groups who have basically the same issues as we do, probably with the same causes eg: gulf war veterans. A broad group on neuro-immune issues generally (like PANDORA?) seems more likely to get results.

- the need to establish some unity of purpose and thereby a large campaign group, which requires very clear and simple founding principles and the focus on a limited set of achievable goals.

- the need for some stronger action in terms of demonstrations, sit-ins etc. (Wessely's place should have a permanent picket)

- the continuing need for an organisation that represents our views and speaks out strongly.

The evidence of the last 9 months (the first time I've really been involved in ME/CFS politics) strongly suggests to me that we will never get anywhere by asking, we have to demand; and it's high time we focused the considerable resource of our rage directly onto the people who provoke that rage, rather than on each other. Surely it should be possible to achieve that?

 

[muffin]

From Frank: This was the post that I suggested we all go to when we respond to nasty, stupid posts, blogs, websites, articles, etc.
http://www.forums.aboutmecfs.org/showthread.php?5662-WPI-and-XMRV-Myths-Facts-Questions-and-Opinions

The "Expert File" - We need very correct, cited by real experts in real medical journals, supported and scrubbed standard comments to hit the idiots with. We have to have a United Front and we must have standard, smart statements that get our point across each and every time we get ALERTS on yet another stupid, nasty, demeaning article/blog/website/comment from the governments of US/Canada/UK/Austrailia and so on....

 

[Mark]

Note this thread as well, similar themes and interests and more people for any forum group we might set up:
http://www.forums.aboutmecfs.org/showthread.php?5806-How-to-build-a-SENSE-OF-URGENCY&p=94313#post9431

 

[Mark]

The "Expert File" - We need very correct, cited by real experts in real medical journals, supported and scrubbed standard comments to hit the idiots with. We have to have a United Front and we must have standard, smart statements that get our point across each and every time we get ALERTS on yet another stupid, nasty, demeaning article/blog/website/comment from the governments of US/Canada/UK/Austrailia and so on....

Cool beans! We are SO on the same page...

Again: first job: name of group, mission statement, definition of objectives.

 

[Frank]

Positive action could be in the name or mission statement

 

[Rrrr]

The topic name of this thread is "What to do next?" Here is my thought on that... How about a multi-city sleep-in during rush hour, all in our pajamas and with pillows and sleeping bags?

i started a thread on that here:
http://www.forums.aboutmecfs.org/sh...leep-In-at-Major-Intersections-Around-the-U.S.