Article: The 'Time For Action' Campaign: the Next Phase

You can view the page at http://www.forums.aboutmecfs.org/content.php?247-The-Time-For-Action-Campaign-Update

 

I had the pleasure of meeting Dr. Mangan at the ME/CFSAC. I sent a thank you note per the request of The Time for Action Campaign. There is an important message in his reply. Would someone in the know please comment about his reply? What can patients do?


"Thank you for your note…we’ll do our best to support the biomedical research that will lead to a proper diagnosis and cure for this terrible disease! However, we need more strong applications from universities, hospitals and research institutions! Please help us help you. Thank you for your support…"

Dennis F. Mangan, Ph.D.

Co-Chair, Trans-NIH ME/CFS Research Working Group

 

I had the pleasure of meeting Dr. Mangan at the ME/CFSAC. I sent a thank you note per the request of The Time for Action Campaign. There is an important message in his reply. Would someone in the know please comment about his reply? What can patients do?


"Thank you for your note…we’ll do our best to support the biomedical research that will lead to a proper diagnosis and cure for this terrible disease! However, we need more strong applications from universities, hospitals and research institutions! Please help us help you. Thank you for your support…"

Dennis F. Mangan, Ph.D.

Co-Chair, Trans-NIH ME/CFS Research Working Group

That's nice that he wrote back - I can't imagine what he means, though by "please help us help you". Would you feel OK about writing back to say we'd love to help him help us and would like to know how best to do that, if he has something specific in mind?

He sounds like a good guy so if he has ideas for productive cooperation I think we should chase them.

 

I had the pleasure of meeting Dr. Mangan at the ME/CFSAC. I sent a thank you note per the request of The Time for Action Campaign. There is an important message in his reply. Would someone in the know please comment about his reply? What can patients do?


"Thank you for your notewell do our best to support the biomedical research that will lead to a proper diagnosis and cure for this terrible disease! However, we need more strong applications from universities, hospitals and research institutions! Please help us help you. Thank you for your support"

Dennis F. Mangan, Ph.D.

Co-Chair, Trans-NIH ME/CFS Research Working Group

Brown Eyed Girl, this is the standard reply his office is sending out to those who have "thanked" him.

There has been a great deal of debate about whether to pursue this campaign further. I have come down on the side that until we see what would amount to a sea change in NIH policy, I will continue to demand action. This is the post I sent Dennis Mangan this morning:

Dennis,

The word is that you are a kind, compassionate man, who genuinely wants to help. And I believe that. But you are employed by an institution that has marginalized, denigrated, but mostly ignored this population, depriving it of both credibility and research funds. As you know, we get $5 million dollars a year, which amounts to very little in real terms.

ME because of the stigma of not being a "serious" disease is a dead end for careers in the academic world, which is driven in large part by how much money a staff member can bring in and how much cachet accompanies it. The answer to this for m.e. is zippo. Not only won't it fill the coffers, but if you attempt to address the illness, you will not find yourself clasped to the bosom of the administration. Don't take my word for it, ask the heroic Ken Friedman of the NJ school of medicine and dentistry.

This community is aware that there are those who would bury the Science article if they could. If Judy Mikovits hadn't been so well connected. I doubt you would even be on the case. This time, however, the game is up. Many of us are aging, emboldening us to a level of passionate activism never seen before in the community. My particular sun is quite high. I'm 57, sick for more than 2 decades: m.e. has devoured my most productive years. I appreciate your attention, but I am not a sentimentalist. I and others will not stop emailing until we see a genuine good faith effort to radically transform the research and treatment landscape.

I have no doubt, now, that the truth about what happened will eventually emerge, like the findings of US experimentation on hapless populations here and abroad. This is an epidemic that has hid in plain sight, whose seriousness was derided and ignored by the institution you are employed by. As far as I am concerned the NIH, while not as horrendously destructive as the CDC towards us, colluded in one of the major coverrups of the 20th century, so good words, warm smiles really don't cut it.









On Oct 21, 2010, at 10:03 AM, Mangan, Dennis (NIH/OD) [E] wrote:

Dear ....

Thank you for your notewell do our best to support the biomedical research that will lead to a proper diagnosis and cure for this terrible disease! We need more strong applications from universities, hospitals and research institutions! Please help us help you. Thank you for your support! Dennis

Dennis F. Mangan, Ph.D.
Co-Chair, Trans-NIH ME/CFS Research Working Group
Senior Research Advisor
Office of Research on Women's Health, OD
National Institutes of Health
6707 Democracy Blvd., Suite 400
Bethesda, MD 20892-5484
Tel: 301 496-9006


MORE RESEARCH AND CLINICAL TRIALS NOW. FUND THE WPI.

 

Many of us are aging, emboldening us to a level of passionate activism never seen before in the community. My particular sun is quite high. I'm 57, sick for more than 2 decades: m.e. has devoured my most productive years. I appreciate your attention, but I am not a sentimentalist.

Wow, Penny! I hear you! I'm 59, sick for a decade and feeling quite like you. I believe there are large numbers of us feeling the same way. IMO, the Time For Action campaign got their attention. We've received their response from our thank-you's. The ball is back in our court. Right? So what is the correct move?

Sasha suggests writing him and asking him specifically what he has in mind.

 

Brown Eyed Girl, this is the standard reply his office is sending out to those who have "thanked" him.

There has been a great deal of debate about whether to pursue this campaign further. I have come down on the side that until we see what would amount to a sea change in NIH policy, I will continue to demand action. This is the post I sent Dennis Mangan this morning:

Dennis,

The word is that you are a kind, compassionate man, who genuinely wants to help. And I believe that. But you are employed by an institution that has marginalized, denigrated, but mostly ignored this population, depriving it of both credibility and research funds. As you know, we get $5 million dollars a year, which amounts to very little in real terms.

. As far as I am concerned the NIH, while not as horrendously destructive as the CDC towards us, colluded in one of the major coverrups of the 20th century, so good words, warm smiles really don't cut it.

I agree. He is a nice guy - he does appear to be concerned and he does appear to be trying but we're way past warm, fuzzy statements - we need actual commitments and I'm sure Bob, Charlotte and Rivka won't be satisfied with anything less. I certainly won't. What we should be asking is "where's the money"? - show us the money.

As to this, though

There has been a great deal of debate about whether to pursue this campaign further.

This leaves me dumbfounded - stop a campaign that got meetings with several NIH officials and which engaged the patient community? What in the world? Who would want to stop something like that? (I can tell you the NIH doesn't like it). I must be missing something. My take was that this is something that we only want to build on.

 

I agree. He is a nice guy - he does appear to be concerned and he does appear to be trying but we're way past warm, fuzzy statements - we need actual commitments and I'm sure Bob, Charlotte and Rivka won't be satisfied with anything less. I certainly won't. What we should be asking is "where's the money"? - show us the money.

As to this, though

This leaves me dumbfounded - stop a campaign that got meetings with several NIH officials and which engaged the patient community? What in the world? Who would want to stop something like that? (I can tell you the NIH doesn't like it). I must be missing something. My take was that this is something that we only want to build on.

Cort,

As unlikely as that might be, we may be on the verge of agreement.

According to what I understand, Rivka, MEZombie and Bob Miller have taken the position of giving Dennis Mangan a chance to show what he can do. I and others think this is ill advised for reasons I outlined in my post. We have the momentum and shouldn't be seduced by "access" which until there is substantial, dramatic policy change, and funding of the WPI, as the symbol of that change, we should continue emailing, faxing, and calling the current cast of characters, as well as others as time goes on.

I honor Rivka, MEZombie, and Bob for demonstrating alot of imagination and initiative but it's like climbing aboard the back of the tiger: you're not really in control of what happens.

Browneyed Girl, and anybody else interested, we should just carry on posting, and if that is perceived as a nuisance or irritant, THAT is the beginning of an effective advocacy in this context. We are not supplicants but citizens demanding what is rightfully ours, research and treatment of a catastrophic disease.

I do agree with MEZombie that we should expand this to include our overlords at the cdc. Remember, they don't have to like you. And remember also, every penny spent by them in the CFS program is a slap across your face.

 

A Comment from Heidi Bauer

http://cfschronicles.blogspot.com/2010/10/random-acts-of-kindness.html


Random ACTs of Kindness


As always, this blog is about my opinions for those who are interested. Something has been gnawing at my me though and I wanted to speak out about it. I posted earlier about TAC because I believed it was a non-offensive, easy and pointed tactic to have patient voices heard directly by Collins and Fauci. We had two statements confirming its effectiveness. First, Cort Johnson quoted LeGrice at the CFSAC meeting as saying "I don't think this What Have You Done For Me Lately campaign is helping. I dont need to have Dr. Collins call me and ask me, What are you doing for CFS? " The second was Dr. Dennis Mangan's response at the CFSAC meeting. I sat there and watched as he politely asked us to stop bothering Collins and Fauci so they can get some work done, supposedly on our behalf, and to go through him from now on with all our concerns. He seems a likeable man, but so is Mike Miller from the CDC who is sent as a CDC cheerleader to the CFSAC meetings. He does it with such genuine kindness that people feel less inclined to attack him. I fear this is where Dr. Mangan will fit in as well.

We have been bamboozled too many times as a patient community to fall for a few random acts of kindness. And, I fail to see where Collins did anything worthy of being thanked, even if we add that we will be watching. I believe in professionalism and making our point without adding to their impression of us as "crazies". We need to have the nerve to annoy those in control of funding and research though. WPI is handing us all the tools we need. Let's use them. We have more ammunition than ever to make our demands clear. Take off the white gloves and keep sending those emails, faxes or make a call today.

 

I understand that people want to continue taking action but that can be done in different ways. I don't think anyone is saying to stop the campaign completely and just go away now.

I don't think it is productive to piss these people off so much that they hate us and sabotage things just to spite us. We have had enough CFS sabotage. We want our presence to be known but we don't want to become a nuisance. Inundating them nonstop and not letting up could be counter productive. It will seem like no matter what they do we aren't happy so why bother trying to help us at all. They may get to the point where they start thinking we actually are just a bunch of crazies. We don't want that at all. We want respect. We don't want to look like a bunch of mental cases.

I am not naive and I do understand that they could very well be just saying all the right things to pacify us which is NOT ok. We do want results and not just a bunch of talk. BUT we can still achieve those results. I don't see anything wrong with giving them just a LITTLE breathing room to see where they take this. If we give them a chance to make good on their promises but we see no results then we go in again full force with our e-mailing/calling etc efforts to show them that we are still here and that we won't ever go away until we get the results we want.

I think that periodic rather than constant bombardment would actually be MORE effective in the long run. If we constantly bombard them without ever letting up a bit I think they will just get used to it and will be less effective. They will just delete every e-mail and voice mail without even reading or listening to it. It will just become part of the job.

BUT if we do it periodically they will get that wake up call/reminder and I think it will have a greater impact that way. They would probably take the time to actually listen to what we have to say if it is done that way rather than constantly.

Just my two cents. I am by no means saying to give up. I am just saying to change things up a bit and do other things to help our cause in the mean time. Give them a LITTLE time to put their money where their mouth is while giving them periodic reminders that we are still here. If they don't show us that they are making changes then we bombard them again.

Maybe we could have one person (or a small group) who checks in with them frequently to see what is happening and to let them know that we are still here and waiting for them to deliver on their promises. Then every so often if no progress is being seen then everyone bombards them again.

Just an idea. I just think that constant harassment could end up back firing on us and I really don't want that. I think we should start out less aggressive and then get more aggressive if we need to.

I do see your points though in why some of you don't want to let up. I can see how not letting up could work but I also can see how it could back fire.

 

The original question to email these guys with was, "what have you done for people with ME/CFS today". Why not ask them to start a daily online record of what they have actually done that day? Of what tangible progress they have made?

I also have concerns about an endless barrage of emails on the one hand, and being ignored on the other. But I think they can easily state their targets and do a daily or at worst, weekly progress update on what they actually have to show in terms of progress. That way, they are on the spot and know they are; and if they start to fall short, another campaign could start. Best of both worlds.

 

Researchers

"""""Thank you for your notewell do our best to support the biomedical research that will lead to a proper diagnosis and cure for this terrible disease! However, we need more strong applications from universities, hospitals and research institutions! Please help us help you. Thank you for your support"

Dennis F. Mangan, Ph.D.

Co-Chair, Trans-NIH ME/CFS Research Working Group """"


I take it to mean that not many are interested in us and that we have to get them interested. It sounds like he is saying if a researcher is interested, puts together a proposal then they will have some ways of helping us If a researcher puts together a proposal and applies for a grant, then they can do something for us. Not many have been interested in researching retroviruses, more have been applying for grants for the other aspects of this disease. I have written to researchers at the university hospital here since October 09 - It is not their job to help us - if they somehow get an interest then maybe they will. They are now interested here and there will be research. Once they get an interest and get a proposal written up, submitted for funding, then its the governments job. I think that is the gist of what Dr Dennis is saying?

glen

 

OK, if lack of quality applications for extramural biomedical research is REALLY the issue, tell me more.

- How much money is earmarked for extramural CFS research and isn't being granted owing to lack of applications?
- Have there been no applications, or applications that were deemed lacking? If they were thought to be lacking, in what way were they lacking?
- How about NIH funding some more intramural research on their own premises?
- How exactly ARE patients supposed to get universities, hospitals, and research instiutions more interested in CFS biomedical research? Apparently being horrendously sick and debilitated isn't enough to do it. Have we been unwilling to get our blood drawn and participate in studies? We're DYING to do it. We'd crawl to the labs on hands and knees to do it.

 

I don't think we let up. If you haven't read the blog post about the NJ CFS Conference here, I would suggest you have a gander.

• The Blog post is very comprehensive covering Dr. Mikovitz's talk and includes:
• The fact that WPI is apparently having trouble getting studies published.
• The (positive) results from the UK XMRV study.
• The high degree of XMRV positivity within ME patient's families.
• And last but not least a rumor that the NCI has been told by someone high up in the government to pursue whether XMRV is involved in prostrate cancer but should distance themselves from CFS.

I found the last statement believable when combined with:

• Le Grice's overall (bad) attitude at the CFSAC including the slide takeaway that said "Until the relationship between XMRV & MLV-like sequences is further clarified, these should be considered as distinct, unrelated phenomena.". This contradicts:
  • Lo/Alters words about the confirmatory nature of their efforts
  • As well as what we've heard from the WPI (and Ruscetti) about finding P variants (more from Mikovitz on that topic in the blog)
  • The Patient Advocate's words "Ruschetti cultured samples from Alter cohort and found x-variant in all of them" in reporting on the NJ CFS Workshop
• The wide divide apparent at the 1st International XMRV Conference Q&A and Stoye's whole attitude.
• All this nonsense about contamination
• Etc.

I'm not ready to let up until real and tangible ACTION has been taken.

 

OK, if lack of quality applications for extramural biomedical research is REALLY the issue, tell me more.

- How much money is earmarked for extramural CFS research and isn't being granted owing to lack of applications?
- Have there been no applications, or applications that were deemed lacking? If they were thought to be lacking, in what way were they lacking?
- How about NIH funding some more intramural research on their own premises?
- How exactly ARE patients supposed to get universities, hospitals, and research instiutions more interested in CFS biomedical research? Apparently being horrendously sick and debilitated isn't enough to do it. Have we been unwilling to get our blood drawn and participate in studies? We're DYING to do it. We'd crawl to the labs on hands and knees to do it.

I feel the response we received from our thank you's is totally inappropriate when aimed at a sick population. It's like asking an orchestra to make beautiful music without their instruments. Urbantravels, you have said it so well that, with your permission, I'd like to use that as my next e-mail to the NIH. I'm no longer starry-eyed and blown away by Dr. Mangan's genuine concern, and perhaps someone higher up told him what to say, but I'm with Otis, I'm not ready to let up until real and tangible ACTION has been taken. I believe that ACTION is to increase spending for ME/CFS. Show ME the money.

 

You go, (you Brown-Eyed) girl.

 

OK, if lack of quality applications for extramural biomedical research is REALLY the issue, tell me more.

- How much money is earmarked for extramural CFS research and isn't being granted owing to lack of applications?
- Have there been no applications, or applications that were deemed lacking? If they were thought to be lacking, in what way were they lacking?
- How about NIH funding some more intramural research on their own premises?
- How exactly ARE patients supposed to get universities, hospitals, and research instiutions more interested in CFS biomedical research? Apparently being horrendously sick and debilitated isn't enough to do it. Have we been unwilling to get our blood drawn and participate in studies? We're DYING to do it. We'd crawl to the labs on hands and knees to do it.

According to XMRV Global Action "WPI has been denied grants from the NIH 6 times since the publishing of the Science paper in 2009". The institute behind a study in Science? Now they're slipshod?

I'm beginning to see why Dr. Bell was so adamant about making donations to the WPI. It's kinda like the Berlin air-lift. If we can't help keep the WPI running it really could get hard for them. I didn't imagine that was possible after Lo/Alter published but you need grants to write papers and those papers have to be published. Both ends of the spigot appear to be stopped up.

And Ruscetti didn't seem to think the money was flowing at the Workshop Q&A.

 

the fact wpi got turned down 6 times by NIH says it all

and don't forget how Aids activists in 80s behaved, no one accused them of being crazy. Crazy people arent organized in this way, CDC NIh know its not a primary mental health issue but sick people are annoying even if they are really sick when you don't feel like helping them

 

According to XMRV Global Action "WPI has been denied grants from the NIH 6 times since the publishing of the Science paper in 2009". The institute behind a study in Science? Now they're slipshod?

Lots of studies get rejected because there is no money. That is the problem - the funding is not in proportion to the magnitude of the disease.

 

OK, if lack of quality applications for extramural biomedical research is REALLY the issue, tell me more.

UT,

Deja vu! Like Dennis Mangan, Ann Schleuderberg(NIH CFS Coordinator 1987-94) complained about extramural applications.

Hope NIH answers your excellent questions otherwise we're back to where we were 23 years ago.

 

BEG,

I'd be happy to let you borrow my bullet points (and please feel free to add any of your own)

The only thing I would change in actually sending this along to Dr. Mangan would be to remove the snark from the last bullet point. Amongst ourselves I have no problem being snarky, but I wouldn't direct the snark against a total stranger, especially one that might be new to the ME/CFS debacle and doesn't fully know the history or how much patients have been denigrated in the past. Maybe I'd rewrite it thusly:

- We patients are extremely willing to do anything we can to help, and we are more than eager to participate in studies and share information as we can. But how are we expected to help get universities, hospitals, and research institutions more interested in CFS biomedical research? Most of us face a tremendous struggle simply trying to get appropriate medical care and support for ourselves in the face of enormous ignorance by doctors, health insurers, and public agencies.