Article: Time to Make a Difference Together by Marly Silverman

You can view the page at http://forums.aboutmecfs.org/content.php?362-Time-to-Make-a-Difference-Together-by-Marly-Silverman

 

I think we need to know and understand the CDC as well as possible. What happened with the nomination of Myra McClure is a good example. That was a big blow and came out of nowhere for me.
We (i guess an US advocacy org would be best for this) should know exactly how the CDC is organized, how it works and who is in which position. We should know about all the decisions they take that affect us, like the nominations for the SEP panel, for example, when they are being made and by whom. We should know who is our friend and who is our enemy within the CDC and try to establish connections, so we will know of everything that happens as soon as possible and can try to influence the outcome.

 

Cort, I wasn't specifically addressing you here, but several of the posts on page 1.

I don't think most of us are intentionally trying to create sides for the most part... most pertinently, there are some things CAA itself has said it doesn't have the time or desire to do... and so in some cases we need to find someone other than CAA to do whatever advocacy becasue that particular thing just isn't CAA's strong point for whatever reason. This isn't saying CAA is all bad, simply that CAA cannot effectively do certain things.

Maybe part of the solution is to figure out what the strengths and interets are of various organizations and advocates, and know who to ask when you want x done, and then there aren't hard feelings when organization a doesn't do x.

I think that's a GREAT idea Willowj......Besides acknowledging where one organization is good and supporting that - I think the kind of organization you are speaking about would maximize our limited resources - and get us all on the front page.

We all want pathophysiological research and we all desperately want more funding....Everybody can agree on that - Khaly can, Heidi can, Mindy can, I can, MCWPA, the CAA, Dr. Klimas - those are our major goals aren't they? Then let's put a lazor-like focus on that. Let's forgive each other the past and coalesce around that. The Int Workshop should come with a major grant offering. That's a great opportunity for us to get together and make that happen.

Let's have an organized effort on one side to be very public and in your face about our concerns and on the other to hit them on the inside.....T

That sounds like a powerful approach to me.

 

Klimas' gaffs like saying 'chronic fatigue' are like nails on the chalk board to me. Overall, though I think Klimas is great. She could have stayed on the AIDS research gravy train, but she helps us a heck of a lot instead.

re the contention that CDC isn't bad: F*** CDC's "CFS" program! It's an evil POS. I hope Reeves, Unger and the other criminals get more than their fair share of papercuts and traffic jams!

This Phoenix will be Rising from the ashes of CDC's "CFS" program after it burns to the ground (metaphorically speaking of course :innocent1.

I agree - sometimes we have to overlook nails on the chalkboard statements - in the interests of our common goals. We have to overlook disagreements in the past - put them aside, put hurt feelings aside. I'm willing to work with anyone..(even John Herd.... )...I really think that if we can get our focus grounded on the big stuff - the smaller disagreements we have will just fade away....

I should have qualified my statement about the CDC. If you were going to say an org is good or bad - you've have to say the CDC is bad - agree completely. What I should have said is 'all bad'; besides their continual stream of missteps the CDC has done some good things (documenting economic distress, funding Dubbo project, Pharmacogenomics project); I agree that the bad (empirical definition, research priorities, personality studies, etc.) far outweighs the good.

I don't know if the CDC is the one we want to concentrate on simply because I don't know what our chances of winning there are. I do think we have a good chance of getting the DHHS to grant more funding to CFS....That is the most important issue in my opinion...

 

I'm not a US citizen or resident and don't have much experience with the CDC, so i'm probably not really qualified to judge them, but i think we might want to be careful in how we are dealing with them.
I don't know what the best approach is, but since the CDC is an agency where 15'000 people work (according to Wikipedia) and is probably a pillar of the US health system and only a small part of it is dealing with ME/CFS, i think we should not call for the dissolution of the CDC or something like that.
I think we should try to be as precise as possible and pinpoint what's wrong or what has been done wrong by whom and only try to change that or hold those people responsible. The CDC is probably there to stay and i think our end goal should be a good relation with the CDC and getting the maximum possible help from them. Of course they and their actions need to change.

Notice this petition: http://www.change.org/petitions/tell-cdc-to-change-their-mecfs-research

CDC particularly looks at infectious disease, public health threats, such as measles, West Nile Virus, etc.

They became involved with our illness from the outbreaks reported to them.

However, NIH does research into illnesses in general. Some examples are aging, alcoholism, hay fever, ALS, Alzheimer's. You can see the list here: http://report.nih.gov/rcdc/categories/

http://mcwpa.org/resources/research-funding-comparison/

Yes, but it was the NIH that has the SeP panel.

There have been some instances where patients react and end up trying to pressure the wrong person or even the wrong agency.

Calling for the dissolution of the CDC is like calling for the dissolution of the Pentagon.

Tina

 

This is maybe slightly off topic for this thread, but I think it's a good place to mention it. I've come up with an easy method for anyone of any means to donate to the WPI.

It's called Drizzle Donations. You sign up one time and it will automatically make monthly deductions to the WPI. You can set the amount as low as you want, even $1. Of course, if you could afford more per month, by all means, go for it.

Look at my signature line below for a link.

Like Marly was saying, if all of us donate just a little, but do it consistently, it will add up to a lot.

I also encourage everyone to go to this post and set up your signature line with the same message, and do the same for every forum that you're on. http://forums.aboutmecfs.org/showthread.php?9200-Drizzle-donations-for-WPI-idea-what-you-think Message #7.

 

Cort is in the post I quoted above:

ok, my bad... while it is true that CDC has done some occasional good studies, for example:

Whistler T, Jones JF, Unger ER, Vernon SD. "Exercise responsive genes measured in peripheral blood of women with chronic fatigue syndrome and matched control subjects." BMC Physiol. 2005 Mar 24;5(1):5. PMID: 15790422

Women with CFS and healthy, age-matched, sedentary controls were exercised on a stationary bicycle at 70% of their predicted maximum workload. Blood was obtained before and after the challenge, total RNA was extracted from mononuclear cells, and signal intensity of the labeled cDNA hybridized to a 3800-gene oligonucleotide microarray was measured. We identified differences in gene expression among and between subject groups before and after exercise challenge and evaluated differences in terms of Gene Ontology categories. Exercise-responsive genes differed between CFS patients and controls. These were in genes classified in chromatin and nucleosome assembly, cytoplasmic vesicles, membrane transport, and G protein-coupled receptor ontologies. Differences in ion transport and ion channel activity were evident at baseline and were exaggerated after exercise, as evidenced by greater numbers of differentially expressed genes in these molecular functions.

CONCLUSION: These results highlight the potential use of an exercise challenge combined with microarray gene expression analysis in identifying gene ontologies associated with CFS.

studies like that are the exception. Lately very rare exceptions. In general the CDC has been very biased and failed to do what it should have done (by law as well as by ethical standards), and that goes for NIH and DHHS as well. I do think it's fair to characterize gov't CFS programs and leadership as overall bad.

We now after all these years have one mid- or low-level NIH official, Dr. Mangan, who takes ME/CFS seriously--but he doesn't even have a permanent staff assigned to him. And we have Dr. Alter at NIH/FDA who is in our corner as well, although he doesn't have any direct power over any of our programs.

 

I'm not a US citizen or resident and don't have much experience with the CDC, so i'm probably not really qualified to judge them, but i think we might want to be careful in how we are dealing with them.
I don't know what the best approach is, but since the CDC is an agency where 15'000 people work (according to Wikipedia) and is probably a pillar of the US health system and only a small part of it is dealing with ME/CFS, i think we should not call for the dissolution of the CDC or something like that.
I think we should try to be as precise as possible and pinpoint what's wrong or what has been done wrong by whom and only try to change that or hold those people responsible. The CDC is probably there to stay and i think our end goal should be a good relation with the CDC and getting the maximum possible help from them. Of course they and their actions need to change.

you're right; I meant CDC's CFS program and some higher leadership is bad. We need to throw out or put on trial some bigwig or two, not the whole entire program.

 

I should have qualified my statement about the CDC. If you were going to say an org is good or bad - you've have to say the CDC is bad - agree completely. What I should have said is 'all bad'; besides their continual stream of missteps the CDC has done some good things (documenting economic distress, funding Dubbo project, Pharmacogenomics project); I agree that the bad (empirical definition, research priorities, personality studies, etc.) far outweighs the good.

Cort- I realize that here you are qualifying what you said. I do want to point out to you that you could really contribute to the 'unity' effort by avoiding making the sort of statement you did initially. It would be understood in the spirit in which you made it if given at a Landmark forum event. But most people, especially ME patients will be offended by anyone saying, in essense, that CDC's 'CFS' program isn't bad. You didn't mean it to be, but these sort of comments are inflammatory and we all have to much inflammation of all kinds! : )

I don't know if the CDC is the one we want to concentrate on simply because I don't know what our chances of winning there are. I do think we have a good chance of getting the DHHS to grant more funding to CFS....That is the most important issue in my opinion...

Certainly NIH needs massively increased funding. Now that CDC adopted, uses and has refused to replace the Reeves criteria, I think that funding increases there, without dropping the Reeves criteria, will only make our situation worse. So at CDC, our first priority is, imo, to get Reeves criteria thrown out, whatever that takes.

 

Cort- I realize that here you are qualifying what you said. I do want to point out to you that you could really contribute to the 'unity' effort by avoiding making the sort of statement you did initially. It would be understood in the spirit in which you made it if given at a Landmark forum event. But most people, especially ME patients will be offended by anyone saying, in essense, that CDC's 'CFS' program isn't bad. You didn't mean it to be, but these sort of comments are inflammatory and we all have to much inflammation of all kinds! : )
.

I agree Justin....Sometimes I put my foot in my mouth - trying to make a point that really doesn't need to be made....It's not necessary and it's stupidly inflammatory. I ws horrified later to see what I wrote. I'm learning. Thanks

 

I agree Justin....Sometimes I put my foot in my mouth - trying to make a point that really doesn't need to be made....It's not necessary and it's stupidly inflammatory. I ws horrified later to see what I wrote. I'm learning. Thanks

Appreciated, Cort.

 

Khaly's (cfs untied) response constitutes the best blog post I've ever read:

http://cfsuntied.com/blog2/2011/02/0...of-engagement/

Extremely insightful. It crystalized for me why I too feel uncomfortable with the calls for 'unity' among ME advocates. Different reasonable perspectives (which mean perspectives grounded in reason, and doesn't imply that the perspectives are moderate or undemanding) should not be ignored or "punished"!

Marly, you did clarify what you meant by 'punished' and think I still don't fully agree with you.

Personally, I see myself in unity in spirit with WPI, mcwpa, PANDORA and I think almost all 'indy advocates'. There is a whole lot of common ground. I really can't feel unity with CAA until things really change for the reasons stated by others here. There is common ground between us, but it isn't substantial enough. And I get the feeling that this is also true for the relationship between most 'indy advocates' and other patients on the one hand and CAA on the other.

Thanks again to Khaly!!

 

It was great to see the blog exchange this week. It is good to see the power of social media give "food for thought". I appreciate Marly and all others stepping up to the plate and another very nice blog by Mary Schweitzer this morning talking about civility when giving input.

Maybe because of my background, I guess I see this in a little different framework. Although emotional for us patients whose daily life's have been significantly altered by this illness, solving ME/CFS is just like solving most major problems of our time. It is very difficult to think of such an emotional issue in a tactical and strategic way, but that is necessary to solve the big challenges ahead of us . We have to be aware of the unique challenges of our illness and emotion will play a role but we must use our resources (human and financial), strengths, leadership skills to solve the problem with a calculated way.

Each advocacy/support/education organization, individual advocate, research organization, clinicians and patients bring a unique strengths, abilities, purpose and must play a key role solving challenges ahead of us. A research org can't do what an advocacy org does which can't do what individuals advocates do and visa versa. Patients must get behind all of these actions in force or we will not be heard. No one organization or individual will solve ME/CFS challenges alone and it is not a competition. It is literally like putting together a puzzle.

You can put whatever label you want on it, but it will take "all hands on deck". It will require treating each other with respect, listening, civility, honesty and knocking down barriers. It will require working together on those goals that most agree on like the lack of funding for ME/CFS research, a name problem, no biomarker, no concentrated public message largely talking to ourselves, government health care agencies who can careless and of course the ultimate goal of a cure for ME/CFS. The question is do we have the audacity to persevere and make decisions that benefit the community as a whole.

Mike Munoz

 

Update on MCWPA FAQ:

http://forum.mcwpa.org/viewtopic.php?f=4&t=3

 

I thought Mary hit this on the head. I agree with Mike that with our limited resources we really do need a unified effort. Absent a completely unified effort, however, I think Mary Schweitzer hit what we need on the head - keep it professional, show respect, critique in a constructive manner and stop the personal attacks.

http://cfsknowledgecenter.ning.com/profiles/blogs/civil-rights

There has been a lot of talk about unity lately. I'm not sure unity is what we need. I think what we need is to understand we are all in this together. What we need is to treat each other with respect.

There is nothing wrong with criticizing research. Researchers do it all the time. Just keep it professional - that means, criticize the research choice or the evidence or the model or the conclusions. Offer alternatives that might have been included. Conversely, as a researcher I know all too well that your research sometimes feels like your baby. But no one should take offense at a desire to discuss the nature, or quality, or results of the research.

Personal attacks are different. Again, you can criticize what someone says, in a constructive discussion. To do so, you have to be willing to accept disagreement. Without demonizing the person you disagree with.

So that is what it comes down to. Allow disagreement, but keep disagreement civil. Show respect for each other.

There are a lot of raw feelings out there right now. For the first time in 25 years, patients have hope. Hope is a wonderful thing, but it is also scary. With so much at stake - the tyranny of the psychobabblers v. recognition that we have a real disease, which would mean treatment, which would mean freedom - it is no wonder that many are on edge.

I know all too well what it means, because on Ampligen I am a real person (who has problems with stamina and shaking off illnesses). I am no longer in a cloudy fog, in pain and confusion 24/7. I can walk, can drive a car, read a book, write. Visit my grown children and grandchildren. Go places with my husband. Walk barefoot on a beach.

 

Mike's post is also a kind of clarion call for me. We have very limited numbers, astonishingly few financial resources, little support in the medical community and, if you look at it competitively, which we must, we are up against other disease groups filled with lobbyists, research centers and decades of federal infrastructure building, for increasingly limited medical research funds.

If we are going to maximize our effectiveness we have to at least try to think more tactically more than emotionally. If he doesn't mind my saying so, Mike knows of what he speaks - he was employed in the non-profit world before ME/CFS kicked him out of employment. There is a realm of expertise and knowledge regarding running effective advocacy campaigns that most of us are unaware of. Both Mike and Bob Miller have background in these areas and I think we should listen extra carefully to them when they speak.

Mike- It is very difficult to think of such an emotional issue in a tactical and strategic way, but that is necessary to solve the big challenges ahead of us . We have to be aware of the unique challenges of our illness and emotion will play a role but we must use our resources (human and financial), strengths, leadership skills to solve the problem with a calculated way.

Each advocacy/support/education organization, individual advocate, research organization, clinicians and patients bring a unique strengths, abilities, purpose and must play a key role solving challenges ahead of us. A research org can't do what an advocacy org does which can't do what individuals advocates do and visa versa. Patients must get behind all of these actions in force or we will not be heard. No one organization or individual will solve ME/CFS challenges alone and it is not a competition. It is literally like putting together a puzzle.

You can put whatever label you want on it, but it will take "all hands on deck". It will require treating each other with respect, listening, civility, honesty and knocking down barriers. It will require working together on those goals that most agree on like the lack of funding for ME/CFS research, a name problem, no biomarker, no concentrated public message largely talking to ourselves, government health care agencies who can careless and of course the ultimate goal of a cure for ME/CFS. The question is do we have the audacity to persevere and make decisions that benefit the community as a whole.

 

Khaly's (cfs untied) response constitutes the best blog post I've ever read:

http://cfsuntied.com/blog2/2011/02/0...of-engagement/

Extremely insightful. It crystalized for me why I too feel uncomfortable with the calls for 'unity' among ME advocates. Different reasonable perspectives (which mean perspectives grounded in reason, and doesn't imply that the perspectives are moderate or undemanding) should not be ignored or "punished"!

Marly, you did clarify what you meant by 'punished' and think I still don't fully agree with you.

Personally, I see myself in unity in spirit with WPI, mcwpa, PANDORA and I think almost all 'indy advocates'. There is a whole lot of common ground. I really can't feel unity with CAA until things really change for the reasons stated by others here. There is common ground between us, but it isn't substantial enough. And I get the feeling that this is also true for the relationship between most 'indy advocates' and other patients on the one hand and CAA on the other.

Thanks again to Khaly!!

I don't think she's with you Justin. She won't work with Pandora because they will work with the CAA and me...MCWPA is probably in the same boat because they will work with other organizations.

For me she starts off by drawing lines again - the 'independents' (who are the independents anyway? Am I not an independent?) vs the organizations.....notice the attempt to split,...the independents do these things but PANDORA, MWPCA - does not????

That’s really unfortunate, as it’s the independents who can bring real useful information to the table. It’s the independents who work quietly, one-on-one, with people in need. It’s the independents who can tell you “this doesn’t work”, or “we need more that”, as it’s the independents who are living it day in and day out. Just like in step one of the business model, the independents are a valuable source of information and action. And to date, it’s ONLY the independents who have advocated consistently for the sickest of the sick.

Then a plea to stop the infighting turns into an attack on the 'independents'. I think she's right and wrong here - she's got her points. In my opinion she's absolutely right that the advocacy organizations need a much smarter approach as well. But so do the other players as well. They both need help! The orgs need to be more skillful (more aggressive advocacy) and the 'independents' could be more skillful (fewer personal attacks that divide us).....I think Marly and I know I support better and more aggressive advocacy by the orgs.

Why point the finger at the independent advocates? Marly goes on to criticize the bickering, but that’s tying two different points together so that you have to defend one to defend the other. I’m not going to do that. Wouldn’t you think that 3 plus decades of getting crumbs would induce a much smarter approach from our advocacy organizations? Why lay the blame at the feet of the independents at large?

I appreciated her stating that the personal attacks go too far.

Here’s where I agree, but only partially. It is horrible to be sick and trying your heart out, and get slammed on a personal level for your efforts. Vehement disagreement is fine, and picking apart the concept at hand is fine, and even necessary. When it disintegrates into personal attack, it’s untenable. It really is heartbreaking.

And provides a reason for them - which is understandable

Let’s explore the psychology of why that might be happening. If, for instance, you were a P.O.W., and had been for 30 years, and every single day you were beaten unmercifully and told you had to scream for an hour straight if you wanted to be fed, you would be conditioned to believe that you were going to be beaten and that you would have to scream if you wanted to live. In CFSworld, we are facing a pretty similar phenomenon. We have been conditioned to believe that we are going to be ignored, denied medical care, denied family support, denied disability income, denied validity, denied diagnosis, denied research, and denied treatment. So there’s a valid and recognizable pathology at work here. If we don’t scream, we are going to stay in the box. So we scream. It’s miserable for the target of the screaming, absolutely. But it’s miserable for the screamer as well.

But then in my opinion misses the point. I don't think anyone from Pandora to the MCWPA is saying 'be nice'. Marly was requesting that the community stop the personal attacks and concentrate on the real goal at hand. That Ad from the MCWPA wasn't 'nice' wasn't nice. For all the upset iwth the CAA - their critique of the CDC wasn't nice at all - it was quite harsh in fact. (while other attempts are too 'nice'). Nobody is saying 'be nice' advocates - just don't be mean to each other. Don't be unnnecessarily divisive in your critiques.

Perhaps instead of talking about punishment, we should start the reconditioning process, by way of actually LISTENING to the patient community and advocating on their terms, rather than by telling them to conform to some advocacy organization’s terms. Why spend another year making nice, to “see” if the powers that be will play ball this time?

And in end here she is- focusing on what divides us...

This is why we can’t unite. We are not coming from the same place, or headed in the same direction. Unger has said she is not going to change the direction of the CDC CFS. Phoenix Rising promotes disingenuous and under-investigated statements as “fact”, and fails to divulge fact when it doesn’t suit purposes. The CAA has repeatedly refused to get involved with promoting funding for the WPI. And I’m sorry to say, P.A.N.D.O.R.A. wants me to unite, while they are playing nice with all three. All of these statements can be verified by anyone who follows the statements and actions of these organizations.

I've disagreed strongly with Khaly and I'll work with her - I promise you that but she apparently is not willing to work with me or perhaps even Marly. Somehow I've failed to divulge information (which information? I don't have the slightest clue -nobody has said) and print disenguous facts (which ones? no idea), PANDORA's letter -signed by 10 organizations - very strongly requested that the CDC dramatically change direction and PR's letter will do the same..and the CAA has done the same; in fact they asked that the program be disbanded and moved to another part of the CDC - but all that is ignored. I assert that Khaly and these organizations do have strong common purposes.

I think that we can find plenty of things to agree on if we chose to look..or we can focus on what we don't agree on...

 

PANDORA's letter -signed by 10 organizations - very strongly requested that the CDC dramatically change direction and PR's letter will do the same..and the CAA has done the same; in fact they asked that the program be disbanded and moved to another part of the CDC - but all that is ignored.

Not any more: PANDORA's announcement: http://www.facebook.com/#!/notes/pa...nnouncing-response-from-unger/193365030683369

Another petition may come after the meeting, based on how it goes, or maybe even something different.

Also, this is an example of what can be done with organizations and advocates work together.

 

Not any more: PANDORA's announcement: http://www.facebook.com/#!/notes/pa...nnouncing-response-from-unger/193365030683369

Another petition may come after the meeting, based on how it goes, or maybe even something different.

Also, this is an example of what can be done with organizations and advocates work together.

A dialogue has been opened - congratulations to PANDORA and the organizations that signed that letter. This is the first time since when - ever (?) patient representatives will actually be dialoguing with CDC officials. That, of course, doesn't mean things will change but at least they are meeting.

(I would guess, though, that PANDORA will still be pushing for substantial change to the CDC .)

 

If anyone is implying that WE, the many patients, have to 'unite' with CAA. That's a little backward. CAA should be 'uniting' with US the patients whom they are supposed to be representing.

And, yes, I know that CAA are representing the wishes of some patients- the ones on the board, their donors and Cort are the ones of which I know. But those views they are representing are in the clear minority, imo. And those who feel they are not represented by CAA and that CAA is harming patients with it's lack of a strong stance against our oppressors, clearly feel very strongly about this (including me obviously). Feeling very strongly about something doesn't get you two votes, but it should be taken into consideration by the 'representative' going against those wishes.

 

Thanks Cort but there are plenty of smart people around us. I learn everyday from the amazing group of orgs, individual advocates and patients dedicated to change thanks to forums like PR.

I want to give thanks to Marly Silverman and the Pandora crew. The letter sent to Dr. Unger and following petition with 10 orgs (including RMCFA) on board is the type of strategic effort I believe will be effective in the end. It will be hard work but it is a good start.

Mike's post is also a kind of clarion call for me. We have very limited numbers, astonishingly few financial resources, little support in the medical community and, if you look at it competitively, which we must, we are up against other disease groups filled with lobbyists, research centers and decades of federal infrastructure building, for increasingly limited medical research funds.

If we are going to maximize our effectiveness we have to at least try to think more tactically more than emotionally. If he doesn't mind my saying so, Mike knows of what he speaks - he was employed in the non-profit world before ME/CFS kicked him out of employment. There is a realm of expertise and knowledge regarding running effective advocacy campaigns that most of us are unaware of. Both Mike and Bob Miller have background in these areas and I think we should listen extra carefully to them when they speak.