Building an advocacy plan in response to Unger's appointment

[medfeb]

At Dolphin's suggestion, I am starting this thread as a summary of the suggestions made in the thread titled 'CDC New Chronic Viral Diseases Branch CHief'

I am the mother of a 23 year old son who came down with ME/CFS in 2010 after a bout of Giardia and Lyme. In the last 8 months, I have begun to experience what you’ve all lived for years both in terms of the impact that this has had on my son and how impossible it is to get any answers from the medical community. But when I turned to the web, I spent countless hours sifting through a plethora of sites that sent me in a million different directions. From my admittedly limited exposure, the comments in this thread about the need for a national advocacy group, an up-to-date patient (and family) web site and a new direction for the CDC struck me as right on!!

So how to make it happen… what’s the action plan? At the risk of alienating any of you who know so much more about this than I, I went through this thread and have tried to collate the ideas that you expressed into a single list, added one or two from my experiences and am sending it back for your consideration as a strawman for a plan that could then be broken out into smaller chunks of actions.

If this doesn’t make sense, just chalk it up to my inexperience. If it does make sense, feel free to fix what I missed or got wrong and I will do my best to collate those comments.
Also, feel free to fill me in on where I am naive. For instance: 1) what is keeping the different advocacy groups from coming together in a concerted way? 2) Could the different advocacy groups agree on a common set of points that they expect of the CDC at this point? Would CFIDS, IACFS agree with the points below or some revision of them?


Strawman Summary of the action recommendations in this thread

1. Create a national patient advocacy group

• 
  Who are the main patient advocacy groups and what will it take to get them to work together? – this community, CFIDS Association of America, IACFS/ME, who else?

• 
  Who are the other key players that can advance the cause and how can you build out that network?ME/CFS specific - WPI, key ME/CFS docs and researchers, CFSAC, who else? Other Neuroimmuno diseases

• 
  How can your families be engaged to help/advocate for you?

2. Influence/Pressure the CDC
Right now – a response (press release or some other kind of campaign) to the naming of Unger – state explicitly what you expect to happen - e.g.

• 
  Strengthen communication channels with patients, doctors and researchers

• 
  Rename the disease, acknowledge that physiological underpinnings

• 
  Change the criteria used to define ME/CFS – drop the CDC’s empiric criteria - is there consensus that the Canadian guidelines are the way to go?

• 
  Update/Redo the CDC strategy for ME/CFS to reflect state of science (the current strategy is from early 2009, still appears to reflect strong psychological orientation)

• 
  Use updated strategy to refocus research dollars

• 
  Update the CDC site – especially
  i. Update/redo information about etiology and treatment that is currently available on the CDC site. The information is old. emphasizes the psychological underpinnings
  ii. Comprehensive overview of research being conducted into ME/CFS whether CDC funded or not

• 
  Implement a physician education and outreach program to address the abysmal way that doctors handle CFS patients today – my son was sent off to a bunch of different experts each of who looked at a piece of the puzzle with no one, even his GP, taking on ownership/partnering with him to put the pieces together.

Ideally the above patient advocacy groups could agree and issue together - is that possible?

Longer term

• 
  Campaign to get dollars redirected if CDC doesn’t change research strategy– like campaign TFA aimed at Sebelius

• 
  Investigate the CDC’s handling of ME/CFS over the years
  i. Documentary (video michael moore type or book)
  ii. wikileaks or FOI requests - "memos and letters that must have passed on such topics as the choice of Unger as new head, the refusal of grants to the WPI, the decision to invite Stoye to the WBG, memos to and from Sebelius over these CFS issues"

3. Other action - some of this would have to wait for the a broader advocacy group to form

• 
  Implement a new or update an existing site for patients and their families - organized, up-to-date information to help understand the disease, different treatment protocols, where to find support, webinars, action alerts, etc. What’s out there is old content or hard to navigate, hard to understand. Here’s one idea but there may be better models http://www.michaeljfox.org/living.cfm. Could the CFIDS site be revamped to be this? I don’t know what the history is with CFIDS org so this may be a dump question but there are some things that are good about the site but its not up to date and is hard to navigate.

• 
  Advocate for research funds – influence government, raise private, influence Pharma

• 
  Advocate for research causes - WPI, any others? Fund raising drive for WPI?

• 
  Raise public awareness to counter perception of ‘stigmatism of CFS community’
  i. Find a publically known spokesman - with CFS (L. Hildebrand, who else?) or without
  ii. Youtube or Facebook campaign?
  iii. Engage the media and leverage them to get the word out
  what's already underway here? - Action campaign? What else?

• 
  Influence the NIH, CFSAC, Congress - On what?

 

[CBS]

Hi Medfeb,

Thanks for your interest and for obviously investing so much time into trying to bring yourself up to speed. A couple suggestions, first stating the obvious - a lot of the more experienced folks here are really sick. They have experience, expertise, and strong opinions but not the energy or health to see something like this through. Almost to a person, I've watched many patients, who as little as a year ago were able to participate in these forums vigorously, find that they had to cut back drastically in order to not simply keep driving themselves into the ground. Yes, we need healthy advocates - thank you.

In addition, did I mention strong opinions? Don't let that discourage you. A lot of those opinions are borne from decades of being ill and mistreated. You're probably going to piss someone off sooner rather than later (watch out for George ). I'd suggest hearing people out, trying to see things from their perspective, and agreeing to respectfully disagree.

Lastly, as a healthy person, you can probably run circles around any one of us. And as a parent you've seen what this disease can do. You obviously get the urgency of all this as lives are simply being destroyed. As you're getting your feet wet, use that energy carefully.

A comment on your first idea "Creation of National Advocacy Organization."

My first draft comments on this are unifying values, time, money and unifying values. There are a lot of groups out there but none of them has enough staff or enough money. The staffs that are there are typically very dedicated and each person has a wealth of experience. Finding a set of simple core unifying values could be your biggest challenge. Identifying these values to ensure the such an organization survives would be my first order of business. It will (at least it should) guide everything else you do.

 

[eric_s]

Hi Medfeb

Congratulations for your post. I feel similarily. We need to use our potential (especially our large number). So there needs to be a national organisation or cooperation between the existing organisation. And people with ME/CFS and their families need to join and try to contribute in the way they can. I realize many people with ME/CFS are not able to do much and that's ok. People should always make sure they don't endanger their own health. But i think almost everybody can make a small donation (say 100 Dollars or Euros per year). And if we could achieve this, it would be huge. I think the challenge is to reach everybody with ME/CFS (plus many are probably not even diagnosed) and then convince them they should join.

Of course, the bigger an organisation or the more organisations trying to work together, the harder it will be to find common goals, a common strategy. But one has to try. There are some basic goals we all share.

I'm on the other side of the Atlantic but i hope that there are people in every country thinking in that way and trying to make it happen.

 

[roma]

Hi Medfeb

Congratulations for your post. I feel similarily. We need to use our potential (especially our large number). So there needs to be a national organisation or cooperation between the existing organisation. And people with ME/CFS and their families need to join and try to contribute in the way they can. I realize many people with ME/CFS are not able to do much and that's ok. People should always make sure they don't endanger their own health. But i think almost everybody can make a small donation (say 100 Dollars or Euros per year). And if we could achieve this, it would be huge. I think the challenge is to reach everybody with ME/CFS (plus many are probably not even diagnosed) and then convince them they should join.

Of course, the bigger an organisation or the more organisations trying to work together, the harder it will be to find common goals, a common strategy. But one has to try. There are some basic goals we all share.

I'm on the other side of the Atlantic but i hope that there are people in every country thinking in that way and trying to make it happen.

yes i truly feel as well we ought to be doing something this site some time has thousands of views to the same theard, probably many peolpe see the same thread many times, but the point is that we are wasting time here discussing whether XMRV cause ME/CFS when it's clear that there some pathogen out there infecting thousands if not millions of lives, whether XMRV or something else, the real scientists will triumph at the end they will not give up, many many before have been called crazy and lunatics when they did great discoveries now we all now that it takes one great thinker to prove thousands wrong, we should be using this time instead to send emails to health organizations, media and maybe foundations so they can support the WPI, if we all send at least 2 emails to the same organization the same day but the very same one in the same day im 100% sure it will have an impact we could do this every single day and change the name of the originazation every day until we have to start all over again, somebody will pay attention to us eventually, the last thread about the 5 papers that published contamination had more than 8000 views in a couple of days just think how the NIH or FDA or any other would feel if they get 8000 emails in one or two days about the same topic and the next week again, you think they will ignore us? i think is worth giving it a try so far i have email, NIH,FDA,CDC,Red Cross,clinicaltrials.gov, and many other and have gotten responses from all of them, but really what is one email gonna do? is time we do something..

Let us not forget as well that we have to keep supporting the people that made the scientific community look at ME/CFS don't forget to email or donate to the WPI,Silverman,Klein,Dr Merlier,Dr Cheney,University of Utah and let them know thousands and thousands are counting on them and we really believe in them

 

[lancelot]

Great idea for a patient advocacy group to respond to and to work with Unger from the grassroots level.

 

[caledonia]

A lot of these things have already been tried to no avail. The definition of insanity is to keep doing the same things over and over expecting a different result.

That being said you do have some good new ideas that haven't been tried - here are the ones I like:

2. Influence/Pressure the CDC
Right now a response (press release or some other kind of campaign) to the naming of Unger state explicitly what you expect to happen

* Campaign to get dollars redirected if CDC doesnt change research strategy like campaign TFA aimed at Sebelius


I would give Unger one year to show a change of direction...


ii. wikileaks or FOI requests - "memos and letters that must have passed on such topics as the choice of Unger as new head, the refusal of grants to the WPI, the decision to invite Stoye to the WBG, memos to and from Sebelius over these CFS issues"


This would add to the body of work done by Hillary Johnson in Osler's Web - which you should read if you want to be up to speed with CFS history.

Once we got hold of the leaks they would have to be widely publicized to have impact - maybe by Hillary Johnson, Amy Dockser Marcus or other journalists.


The ME/CFS Worldwide Patient Alliance was recently formed to do hard hitting advocacy the other orgs won't touch. If you're not familiar with them, check them out.

 

[medfeb]

Thank you for time you took and the replies you sent.

Given your responses here and the earlier thread, it seems that pressure on the CDC is the first priority and time sensitive. A letter stating what you expect to happen under the new leadership and sent to the CDC but also simultaneously to key newspapers across the country and ideally signed by as many people as possible.

If you agree, I would need your help. I can write but I dont have the deep knowledge and history that all of you have. Are the points at the top of this post the correct points? If not, what should they be? Your help will make all the difference

The other central point that people responded to was more coordination across advocacy groups or a national advocacy group. Here's a few that I have found - are these the key ones?

• International Association for CFS/ME
• CFIDS Association of America
• Phoenix Rising
• The National Alliance for Myalgic Encephalomyelitis
• ME/CFS WorldWide Patient Alliance
• Pandora
• Co-Cure ME/CFS and Fibromyalgia
• National CFIDS Alliance

What's missing or should be removed? State level orgs? Any other background?

Again, thank you for your feedback and whatever help you can give me. We all have our own way of dealing with this disease and this is mine.

 

[markmc20001]

my perspective

Hi and welcome to the endless battle against the heavily stigmatized disease mis-named CFS.

Here's a couple of random observations that may provide insight, or not.

The CDC has been useless, they do not intend to help. The CDC's job is to keep patients and doctors in the dark for 25 years. No matter how much you badger the CDC or CFSAC, or congress, it won't do any good. In reality no progress has been made in 25 years with the help of those organizations.

The congress and senate doesn't give a hoot!! Emailing and calling is useless; they have heard this for 25 years and done nothing. In fact, I would argure the Congress and Senate republicans want to repeal the so called OBAMACARE, becuase they know how many people are sick. For the same reason, the GOP Congress is trying to prevent the latest whistleblower law from getting through. The GOP is working for the lobbyists and doesn't want the lies out in the open that that scientists on the government payroll (like Dr Reeves) have worked so hard on. (see my post in general CFS news about the whistleblower law)

http://forums.aboutmecfs.org/showthread.php?9191-GOP-Objections-Threaten-Whistle-Blower-Rights-Bill

The Whittemore Peterson INstitute has figured out the government agengies don't plan on helping. WPI is taking action and is doing real reseach NOW without government funding. If you or somebody wants to donate, giving money to the WPI is the best bang for your buck in my opinion. A good avenue would be to contact rich folks without an agenda and educate tehm on the WPI and get them to drop some serious dough. John EDwards, Jesse Ventura, hit up the rich for donations to the WPI for reseach now. We are in can go right around the government with a large $100 million donation like the one Mark Zuckerburg just gave to his favorite college. Fund the WPI, It goes directly to finding the real cause and real treatments. Keep WPI alive, so we can thrive!

My main point is skirt the government, or plan on using a lawsuit to force them into submission, and be aware of all the studies that have made CFS a disease with stigmatism. A more effective approach may be trying something new! Becuase whatever everybody has been doing for 25 years obviously doens't work.

 

[eric_s]

I think it's true that the CDC failed for a long time, but i also believe that if the evidence is here that XMRV is in the blood supply and transmissible or even causes ME/CFS, things will change quite dramatically. They will then do what's right and necessary, i believe. They will have no other choice anyway.

Nevertheless, i also believe that we, who have ME/CFS, must do our part too. Because the more resources there are, the better, and so there must be funding from patients, families, friends, the general public and governments.
For that reason i think it's important that ME/CFS organisations work together and maybe even some new ones have to be started.

At this moment i think you can try to influence the CDC but it probably won't help much. First there needs to be evidence, in my opinion. So i guess it's best to donate to places like the WPI or others, who can produce that evidence, if you can. And of course it would be great to get some rich people to donate, i totally agree.

 

[Hope123]

I think you should contact PANDORA's founder, Marley Silverman, who has been working for many years to get together groups across the country despite being quite sick herself. There are several strong state groups -- Mass/ New Jersey/ Wisconsin/ Vermont -- and she's tried to coordinate things with them as well reaching out to other groups. I believe PANDORA is part of the ME/CFS Worldwide Alliance also. Just look up PANDORA's website contact info.

I think one point that would really help is for healthy people to support advocacy efforts. This is one point we, as a community, haven't focused on as much compared to other chronic disease groups. Part of it is many people are estranged from families/ friends due to this illness. In our local area, a friend tried to put together a "healthy person" ME/CFS advocacy group; we didn't get many responses at all but part of it also was he (and I and a few others) just didn't have the health to put it together to being with. Perhaps you can talk to one of the larger groups about working on this point.

I was talking to my doc the other day who has seen the HIV story unfold from the first days in San Francisco. The controversy over XMRV and ME/CFS reminds her of the early days of HIV with the difference that you can't ignore people dying in large numbers rapidly and HIV+ patients still had the health to protest in public. She took a look at me and said it was unfortunate our poor health prevented the latter.

 

[WillowJ]

first, medfeb, thanks for your interest and energy. having healthy people advocate means the world. I'm sure it means the world to your son, too.

Ok, one more organization:

Myalgic Encephalomyelitis Society of America
www.cfids-cab.org/MESA/index.html

And some international organizations because, even though not pertinent to building a national coalition, gaining proper recognition is an international effort. The situation of the health authorities' (and therefore doctors' and the public's) false belief systems about CFS was created internationally.

The CDC's shabby name of CFS plus the Wessely school's Oxford inclusion criteria are the two key items that together have permitted and sustained this evil. Both the name to destroy the historical connection to medical knowledge of ME, and the inclusion criteria to water down the patient pool to the point that there was no possibility of finding anything significant (except that which could be manipulated by the Wessely school themselves, to fabricate the appearance of scientific support for pre-determined conclusions).

Also, British and American health authorities appear to have tremendous influence around the world.

National ME/FM Action Network (Canada)
http://www.mefmaction.net/Home/tabid/36/Default.aspx

Alison Hunter Memorial Foundation (Australia)
www.ahmf.org/infosheet.htm

25% ME Group (UK)
www.25megroup.org/

Also, for your own research, you may find the following helpful, and some of these are advocacy contacts as well:

Mindy Ketei, journalist: www.cfscentral.com
The M.E. and CFS Information Page: www.cfids-me.org
http://web.pacific.edu/College-of-t...-Laboratory/Pacific-Fatigue-Lab-Advocacy.html
http://livingwithchronicfatiguesyndrome.wordpress.com
http://www.pugilator.com
http://www.mesite.dk/ME-CFShistory.htm

funding and misappropriations problems:
http://cfsuntied.com/blog2/2010/10/16/study-inadequate-nih-funding-for-cfs/
misappropriation would seem to be a chronic problem:
http://community.seattletimes.nwsource.com/archive/?date=19990528&slug=fati28
http://www.co-cure.org/audits.htm


What we need is:

*Funding for research into biomedical pathologies

*Effective treatments, urgently. Funding, and fast-track status for any and all promising treatments.

*Education about known biomedical pathologies and new discoveries for physicians (including specialists, pharmacists, and allied health professionals), the social services, education officials, and the public

*Radical change in emphasis at the CDC, whether or not that means we need all new people (William Reeves and James Jones should be dismissed [moving Reeves to another department is not sufficient; someone who is unable to perform differential diagnosis and who allows personal biases to influence study design should not be working with patients in any capacity]; the others should be given a chance to demonstrate whether they can embrace an appropriate biomedical model, work with outside researchers, find some communication skills, and develop rapport with the patient community)... possibly some higher official(s) whose name(s) we don't know needs to go

*Change in the social services so more people disabled by this are able to get disability support. (Of secondary importance, change asset test so there is no disparity between people who have a house and/or car and people who are saving up for a house and/or car; this disease can hit early, before we have time to have bought a house. Update monthly support amount to be a little more realistic livability, especially for someone who may have sensitivities [i.e. cannot just buy cheapest foods and shampoos] and high medical costs.)

*Access to disability aids such as power chairs, which would help us participate in more life activities

We need Congressional hearings, not just for us, but to highlight how badly medicine treats people whom it cannot readily diagnose. We are not the first to be treated this way (epilepsy, polio, autism, multiple sclerosis) and are not the only ones being so treated now (chronic Lyme disease, irritable bowel syndrome, sometimes migraines, fibromyalgia is becoming less badly treated but not universally so), but ours is one of the more egregious and long-lasting of cases.

Which makes it the perfect example. Merely because the handiest diagnostic tools don't show what's wrong, or the interpretation isn't a standard disease (well, there are some MRI lesions but it's not MS so the patient is healthy), the patient is thought to be deluded about the nature of her (it's more often a her) condition. As if she hadn't lived in her body long enough to know what was stress or depression, and what was disease.

This dismissal of patients who cannot be readily diagnosed must not be allowed to continue. It must be recognized as a humanitarian abuse, and medicine must change its strategy. For this reason, we need Congressional hearings. Or a huge media hue and cry. Or a big lawsuit. But probably Congressional hearings, because they can issue subpoenas and create consequences (which will hopefully make a lasting impression) and don't require us to spend vast amounts of money on attorneys.

 

[Dolphin]

I'm afraid I don't have time to read this thread at present.
But one thing healthy people can do that ill people on their own generally can't do is bigger fund-raising events. Or indeed it's probably hard to do most fund-raising events in the 3-D world without healthy people.
There is a shortage of money in our illness more than in a lot of illnesses - raising a certain amount of money can make a big difference. And if it's for research, it can end up leveraging bigger amounts of money i.e. as a researcher may then be able to get a grant.

 

[lancelot]

The CDC's shabby name of CFS plus the Wessely school's Oxford inclusion criteria are the two key items that together have permitted and sustained this evil. Both the name to destroy the historical connection to medical knowledge of ME, and the inclusion criteria to water down the patient pool to the point that there was no possibility of finding anything significant (except that which could be manipulated by the Wessely school themselves, to fabricate the appearance of scientific support for pre-determined conclusions).

Exactly. The Weasel did the same thing to Gulf War Syndrome by blaming it as a mental disease. It has taken almost 20 years to finally uncover GWS by independent scientist/doctors and for a final consensus by the US government and medical establishment that it is a disabling physical disease with 2 accepted causes. Off topic, but we should look into GWS as a huge clue to ME/CFS.

 

[markmc20001]

I think it's true that the CDC failed for a long time, but i also believe that if the evidence is here that XMRV is in the blood supply and transmissible or even causes ME/CFS, things will change quite dramatically. They will then do what's right and necessary, i believe. They will have no other choice anyway.

Nevertheless, i also believe that we, who have ME/CFS, must do our part too. Because the more resources there are, the better, and so there must be funding from patients, families, friends, the general public and governments.
For that reason i think it's important that ME/CFS organisations work together and maybe even some new ones have to be started.

At this moment i think you can try to influence the CDC but it probably won't help much. First there needs to be evidence, in my opinion. So i guess it's best to donate to places like the WPI or others, who can produce that evidence, if you can. And of course it would be great to get some rich people to donate, i totally agree.

There was a scientist named Dr. Elane DeFreitas in the 1990's that discovered a virus connection in CFS. Her career was ruined and the whole viral link was burried by the CDC and the media.

Now it appears we get five reports from europe that are supposed to be the end of the debate according to one newspaper article in the Chicago trinbune. Which are not baased on real science and only prove that contamination could play a role, and don't do anything to disprove the WPI's findings. Everybody should be working to prove or disprove WPI findings and they have all danced around it because the WPI has a rock solid paper and research to back it up.

The scientific community can only find and treat the Virus if the CDC and others admit to a virus being there, which they have not for 25 years. So good luck getting your evidence if nobody is going to work by any real science, and we have goons like Reeves, Wessley, and Stowe others still hanging around creating balony studies based on phony psychology.

The cat is out of the bag with the internet and anybody paying attention can see the CDC and the UK are trying to bury this like they did Dr Defreitas in the 1990's.

Retrovirus testing has been around for 30 years since the HIV ourbreak, the FDA proved the knowhow is there and these clowns at the CDC are just slowing down progress.

Patients need to wake up and start demanding results through legal action instead of waiting year after year for govenrment panels who's intentions are not genuine.

I'm still young and don;t want to loose the rest of my life while what I consider an obvious cirucs act continues. From my perspective the methods for duplicating the WPI studies have been grossly imcompetant and negligent.

 

[justinreilly]

my 2 cents:
I applaud the organizing and grass roots activism to address this problem (Unger) and our plight in general. This is just what we need.

However, we must realize that CDC has been waging a concerted war on us since the beginning. Unger has amply shown she is another CDC "CFS" charlatan. I believe it is harmful to us to give them any "benefit of the doubt." I believe prudence demands that we assume everything CDC does and says is meant to undermine us until it is proven otherwise. Burn me once shame on you; burn me ten thousand times, shame on me.

CFIDS Assoc of America is not a true patient advocacy organization, imo.

I think the ad in the Wash Post was perfect and a template for what we should be continuing to do. I was however disappointed it didn't garner more publicity. But I do think we should definitely continue on it that vein.

 

[usedtobeperkytina]

Pandora

Sorry I wasn't following this very well. I did contact Med, who started the thread.

Thank you, Hope, for recognizing the advocacy efforts of PANDORA.

I have been with PANDORA since September. Before I officially came under contract, I helped with writing this strongly-worded press release:
http://www.pr.com/press-release/258171 (You will notice that Congressional hearings are one of the things we urge.) This press release was read by a patient advocate. He asked if he could present it to NIH officials at a meeting they were having at the XMRV International Conference. We were honored.

Then, we worked very hard to get a brochure done. See a copy here: http://www.pandoranet.info/documents/Pandora2010FinalBrochure.pdf I want to make clear, we had someone who posts here, Lynn, help with this. This brochure combined the need to act, giving hope, focusing on the solution with understanding of the impact the illnesses make. You will notice we particularly looked for subjects who break the stereotypes. We had a man for fibromyalgia, a boy for ME/CFS and a woman for Gulf War illness. We printed 1,000 and may have to print more. We planned to have enough for a year. But may run out.

We prepared and Marly Silverman gave testimony to CFSAC meeting.

Then, we had a few patient advocates who planned a passive demonstration at the CFSAC meeting. Marly was approached for her opinion. A plan was made. And PANDORA designed and paid for the "ACT NOW" cards used. (It was really neat to see them in the webcast after I designed them. That demonstration was very effective. Some of these patients ended up having a separate meeting with a government official who wanted to hear some concerns.)

Then we had the New Jersey conference right afterward. While there, we met some new patients, networked with other patient organizations and research institute leaders to look for opportunities for collaboration. It was really very interesting to meet people I have seen on message boards, heard about, and some patients who were just diagnosed. A really great mix there of old timers, movers and shakers and some we were able to help with information.

Meanwhile, PANDORA took the initiative in supporting the patient-driven ad campaign, MCWPA. And, patients helped, other organizations joined, and success in the form of a 1/2 page ad in The Washington Post (http://mcwpa.org/wp-content/uploads/2010/12/Dec.-6-WP-Page-12-Ad.pdf) reaching over 500,000 people, along with a press release that was on multiple websites all over the world, and a few news articles: http://mcwpa.org/in-the-news/mcwpa-in-the-news/ (More results coming soon.) Oh, by the way, the press release was one of the three on the home page of the PR Newswire for at least 24 hours. We announced to the world there is a retrovirus in the blood. We shared that anyone can get the illness and that it is as disabling as late-stage AIDS. We even got the picture of an ME/CFS patient in Times Square: http://mcwpa.org/change-needed-now/advertisements/times-square/ This is just the beginning. MCWPA is recuperating from months of grueling work, including a website with a hard-hitting message: http://mcwpa.org/ Please, if you have some ideas for future public actions, particularly ads (print and video), go here: http://forum.mcwpa.org/viewtopic.php?f=61&t=74 I would love to list all those who helped. But it is too many to list. Donations, spreading the word, giving opinions, voting for final, and much more. All of this was needed for this to be successful, including a spirit of cooperation and humility. We had over 400 who voted on the ads. This is a great example of what can be accomplished from organizations working together and patients working together.

Also, meanwhile, patients started an advocacy effort targeting American Red Cross. PANDORA was asked to write a letter. We did. You can read it here: http://www.pandoranet.info/documents/AmericanRedCrossFinalRevisedLetter11-14-2010.pdf And in late November, ARC made a statement. And, we got a response from our letter that said that they recognized that the policy on ME/CFS patients not donating blood needs to be more prominent.

Next task, a letter to the FDA Blood Products Advisory Committee. We made the letter and sent copy of ARC letter and copy of MCWPA ad. See the letter to FDA committee here: http://www.pandoranet.info/documents/FDABLOODPRODADVISORYCOMMITTEE-PANDORALETTERDEC092010.pdf

Meanwhile, PANDORA is working to get a more modern, cleaner look to the website.

Whew, no wonder I have had to take some time to recover.

Things are a little slower now. But, we are working with other organizations now for a collaborated effort concerning changes in the CDC. I hope to be able to tell more later part of this week. We are going to do an initial action, see if we get results, then regroup for possible other actions later.

Meanwhile, we are still working toward getting NEI Center off the ground. This effort involves wooing politicians, universities, physicians, research institutes and businesses to give their support. Progress is being made. Check it out: http://www.neicenter.com/

Also, Marly is working to get a meeting with Secretary Sebelius concerning funding the NEI Center. If you have not signed the petition, please do so here: http://www.change.org/patient_allia...letter_to_us_secretary_of_health_from_pandora We are wanting to build pressure on this now. Goal is 10,000 signatures. Through Change.org, Sebelius staff gets an e-mail every time someone new signs the petition.

And, every month, we send out a newsletter.

Boy, been a busy four months. This doesn't include all stuff PANDORA did before I came under contract with them.

Sorry if this is long. But seemed to fit overall topic and Hope mentioned some PANDORA work. Also wanted you to know group of patients, PANDORA and some organizations are being proactive concerning Unger's appointment.

Tina

 

[eric_s]

There was a scientist named Dr. Elane DeFreitas in the 1990's that discovered a virus connection in CFS. Her career was ruined and the whole viral link was burried by the CDC and the media.

Now it appears we get five reports from europe that are supposed to be the end of the debate according to one newspaper article in the Chicago trinbune. Which are not baased on real science and only prove that contamination could play a role, and don't do anything to disprove the WPI's findings. Everybody should be working to prove or disprove WPI findings and they have all danced around it because the WPI has a rock solid paper and research to back it up.

The scientific community can only find and treat the Virus if the CDC and others admit to a virus being there, which they have not for 25 years. So good luck getting your evidence if nobody is going to work by any real science, and we have goons like Reeves, Wessley, and Stowe others still hanging around creating balony studies based on phony psychology.

The cat is out of the bag with the internet and anybody paying attention can see the CDC and the UK are trying to bury this like they did Dr Defreitas in the 1990's.

Retrovirus testing has been around for 30 years since the HIV ourbreak, the FDA proved the knowhow is there and these clowns at the CDC are just slowing down progress.

Patients need to wake up and start demanding results through legal action instead of waiting year after year for govenrment panels who's intentions are not genuine.

I'm still young and don;t want to loose the rest of my life while what I consider an obvious cirucs act continues. From my perspective the methods for duplicating the WPI studies have been grossly imcompetant and negligent.

I know about Elaine DeFreitas. But as you are probably aware, the WPI have stated very early on, that XMRV is not the DeFreitas virus. So, unless there are multiple causes for ME/CFS, it's not possible that both are right.
As far as i know, Elaine DeFreitas was not able to reproduce her findings in a blinded study. Nevertheless it would be interesting to see investigation into her findings.

There is the Blood XMRV Scientific Research Working Group and the Lipkin study working to find out if XMRV is in the blood supply, transmissible through blood transfusion and wheter it is associated with ME/CFS (Lipkin). The WPI is involved in both of them. So there are definitely efforts underway that aim at producing the necessary evidence. What is frustrating is that they proceed slower than one would wish.

The recent studies published in Retrovirology might well have been coordinated and the way this was fed to the press was not ok. But this has not stopped one of the groups that were in the "pro XMRV" camp before. So i'm not afraid this will change things. It's not possible to do that. In contrary, it seems to have brought Klein and Silverman into this "fight". So i think it pretty much backfired.

None of us wants to wait, that's why i say we need funding and at this moment, before the results of the Blood XMRV SRWG or the Lipkin study are in, probably only patients and their families and friends can provide this. Governments first want to see their own results confirm XMRV before they will really get involved, i think.

 

[eric_s]

Meanwhile, we are still working toward getting NEI Center off the ground. This effort involves wooing politicians, universities, physicians, research institutes and businesses to give their support. Progress is being made. Check it out: http://www.neicenter.com/

Also, Marly is working to get a meeting with Secretary Sebelius concerning funding the NEI Center. If you have not signed the petition, please do so here: http://www.change.org/patient_allia...letter_to_us_secretary_of_health_from_pandora We are wanting to build pressure on this now. Goal is 10,000 signatures. Through Change.org, Sebelius staff gets an e-mail every time someone new signs the petition.

I like the idea of the NEI center. This is what i hope, that we will have a number of such centers not too far from now.

 

[Cort]

Hi Medfeb,

Thanks for your interest and for obviously investing so much time into trying to bring yourself up to speed. A couple suggestions, first stating the obvious - a lot of the more experienced folks here are really sick. They have experience, expertise, and strong opinions but not the energy or health to see something like this through. Almost to a person, I've watched many patients, who as little as a year ago were able to participate in these forums vigorously, find that they had to cut back drastically in order to not simply keep driving themselves into the ground. Yes, we need healthy advocates - thank you.

In addition, did I mention strong opinions? Don't let that discourage you. A lot of those opinions are borne from decades of being ill and mistreated. You're probably going to piss someone off sooner rather than later (watch out for George ). I'd suggest hearing people out, trying to see things from their perspective, and agreeing to respectfully disagree.

Lastly, as a healthy person, you can probably run circles around any one of us. And as a parent you've seen what this disease can do. You obviously get the urgency of all this as lives are simply being destroyed. As you're getting your feet wet, use that energy carefully.

A comment on your first idea "Creation of National Advocacy Organization."

My first draft comments on this are unifying values, time, money and unifying values. There are a lot of groups out there but none of them has enough staff or enough money. The staffs that are there are typically very dedicated and each person has a wealth of experience. Finding a set of simple core unifying values could be your biggest challenge. Identifying these values to ensure the such an organization survives would be my first order of business. It will (at least it should) guide everything else you do.

Nicely thought out Medfed. I agree with CBS.....some big problems are money and healthy bodies. A couple of healthy bodies making a commitment to making a difference could do wonders.

 

[medfeb]

I want to thank all of you for your comments - I appreciate how difficult that is especially at this time of year and am grateful to each of you.

As suggested by Hope, I was able to talk to Tina at Pandora today and will follow up later in the week. She posted in this thread about the actions Pandora is taking which includes working with other organizations now for a collaborated effort concerning changes in the CDC (see item #16). Her post said she hoped to have more information on that later in the week.

And as suggested by a number of you - healthy advocates could be very helpful. If any members of your families are interested and able to collaborate together as healthy advocates, please dont hesitate to contact me on this site.