(This interview took place in 2008)
How did your story with chronic fatigue syndrome (ME/CFS) start?
I was working for a non-profit organization I went home at lunch to do the laundry. When I got back to work it took me ten minutes to get out of the car. I barely got into my office and then I collapsed and someone had to take me home. Four months later I had to stop working.
Oddly enough my roommate ended up with the same problem and we both went to the same clinic but we had different doctors. We both got diagnosed pretty quickly but they didn’t know what to do with us and sent us to the Mayo Clinic. About $20,000 later I saw Dr. Paul Cheney.
You’ve played a central role in PANDORA, the Miami CFS organization. How did you get involved in PANDORA?
I was at the CFIDS Associations Lobby Day when someone said you have to talk Marla McKibben Silverman. We thought the CFIIDS Association of America needed chapters, at the time but they weren’t interested. Marly and I both thought that we needed to be going to state and national houses to ask for CFS funding. Not long afterwards PANDORA was borne.
PANDORA is such a dynamic organization. What is Pandora doing right?
We saw a lot of things right away that were not working in the community and on Capitol Hill and we decided to try and fix them. It really helps that Marla (Marly Silverman) is such a dynamo. She is able to put people together and accomplish things. She dreams big and then she does it When we first starting going the Hill people would tell us that we wouldn’t get to meet with anyone and then we saw everyone! We’re also really lucky to have Nancy Klimas – a doctor with a good reputation who’s very involved and willing to help us.
(Marly Silverman spent a good deal of time lobbying while she was in Washington this time. She got some congressional staffers – for the first time ever – to come down and visit the CFSAC meeting. Among other things PANDORA is lobbying for a Center of Excellence in Florida and has just put on a Golf Tournament that grossed approximately $80,000).
While we need a lot of help with the day to day operations like updating our website, big things like getting state endorsed CME programs, and congressional support and enthusiasm for a CFS Center of Excellence are moving forward.
I just want to get an idea of how this goes. You make an appointment to see your Congressman or Senator and then what? Are you asking them to do something specific? Or just trying to make them aware of ME/CFS? What specifically can a Congressman do for a CFS constituent? How can they make a difference?
I’ll give you the basics of how the US House of Representatives and Senate (Congress) works and why we as CFS patients need to talk to them first, and then go into the rest of the how to do it.
In the United States we have three branches of government Legislative, Executive and Judicial.
The Legislative Branch (Congress) makes the laws for the country. This includes CFS related laws which created the Chronic Fatigue Syndrome Advisory Committee, the entire US budget (things like the CDC payback for misappropriated funds take place in here) and disease specific legislation, like the creation of a CFS Center of Excellence. The Legislative Branch has the money. The Executive Branch (The President and his Cabinet) presides over the government. If Congress passes a law, for example creation of the CFSAC, then the Executive Branch executes the law. So the CFSAC members are advisors and accountable to the Executive Branch of government.
The Judicial branch decides if the laws passed by the Legislative Branch are constitutional.Each branch is separate, separation of powers is very important; it’s how we avoid dictatorships.
So why is this important to know? If I as a CFS patient believes there needs to be more CFS research funded by the Federal Government, or a Special Road Map initiative for CFS. The patient has two avenues to pursue. First is the legislative branch. Go to www.house.gov and www.senate.gov to learn who your representatives are. You will have two Senators and one house delegate. All three have been elected to represent you in making the laws of the country. All you have to do is contact the office of your Senators and Congressman to schedule an appointment with a healthcare staff member; or you can send an email or make a phone call. These people control the Federal Budget, this is who you ask for money for CFS projects.
The Executive Branch is important to CFS patients because that is where the Chronic Fatigue Syndrome Advisory Committee resides. They advise a member of the President’s Cabinet (The Secretary of Health) on CFS issues. This is a forum for bringing for actionable ideas. The executive branch executes the laws of the legislative branch. So if the CFSAC makes a recommendation, but there is no money for it, you can then go to the Legislative Branch and ask for it.
This is something PANODORA is very passionate about. Years ago when the CFSAC under the leadership of David Bell recommended five Centers of Excellence for CFS, Marly and I grabbed the idea and headed to Washington. (I wasn’t on the CFSAC then so I could do this.) We made appointments with everyone who would see us. It started about a month before our trip with faxes and emails asking for any appointment we could get during the two days we would be on the hill. We went to most appointments together and pitched what we wanted. A dialogue began that still continues. PANDORA continues with the help of congressional staffers to submit an Appropriation Request (how a law for the budget starts) each fiscal year for a Center of Excellence.
Some questions you can expect are how many people have CFS? 1-4 million Americans. Does these impact minorities? (Yes, the current Georgia study has found that more Latinos and African Americans have this illness than was previously thought.) Why should CFS be a priority in spending vs. anything else? is always asked. Be prepared to speak for less than five minutes. Have a 1 minute pitch for those with no time (elevator and hallway conversations) but be prepared to talk longer.
I think Marly and have spent up to 30 minutes with a group of staffers at one time. If you don’t know the answer, be honest – you’re a patient you don’t have to know everything. You just need to know what you need and be able to express it.
A big don’t is DO NOT ramble. We in the CFS community tend to do that it’s the cognitive problem. We’re trying to be engaging and multi-task our brain and since CFS patients don’t multi-task well we can tend to miss cues telling us our time is up. Like the “Thank you for coming”, or someone standing up. Keep your story short.
I use index cards to state the ideas I need to cover. I tell the staffers up front that part of my illness is cognitive so I will be using index cards to keep me on track.
PANDORA makes appropriations requests every year for Centers of Excellence. How did this come about and what are you trying to accomplish?
It started years ago at the IACFS/ME Wisconsin Conference. David Bell spoke about the need for CFS Centers of Excellence. I spoke with Dr. Bell a bit while we were leaving the conference for the airport and he recommended a book on Centers of Excellence programs.
Soon Marly and I were on the hill asking for funding for this program. I did research on how things get done in Congress. Remember congress’s main role is to establish a budget. Once I found out anyone can submit an appropriations request I contacted my Senators and got the forms. The temporary Congressional budget now includes a request for 500 million dollars for CFS research. We used to ask for $1 million but were told that that it’s been quickly deleted because it’s too small. Currently I believe PANDORA’s appropriation request is for $5 million.
Chronic Fatigue Syndrome Advisory Committee (CFSAC)
You’re our patient representative on the Chronic Fatigue Syndrome Federal Advisory Committee (CFSAC) (Rebecca just ended her term). Reportedly it wasn’t easy to get a patient representative on there. You’re mixing it up with some of the top names in CFS and with some pretty weighty government officials. In a sense you’re the only amateur on the panel Do you have to struggle to get your voice heard or do you feel like you’re listened to?
When I first started on the committee I used to joke with Nancy Klimas that she needed to write a book called “Med School for dummies” because so much of the medical jargon was over my head. So I ask a lot of questions. I don’t think I struggle for my voice to be heard, if you read the minutes I’m a very vocal participant. Patient are the reason this committee exists, the charter for the CFSAC directs the committee to make recommendations to the Secretary of Health pertaining to CFS.
If you go to the minutes online and search for my name you will find that I’m not shy about asking questions. Because I’m not a patient I don’t have to worry about career suicide, I can ask anything. That is a huge advantage.
Before I was a committee member I traveled to DC to testify at the meetings several times. It’s so important for patients to know this is a great venue for ideas on how to move CFS issues forward and find solutions to current problems. The train goes to DC and a cab isn’t that expensive. If you like anywhere near a train station this is an inexpensive and more comfortable way to travel than air. Come for one day to testify if you can. If you can’t attend the meeting, you can still participate by submitting your testimony in writing. If you want to participate, start by visiting the CFSAC website at http://wwwhhs.gov/advcomcfs/index.html to the contact us tab and request time during the public comments section to read a statement or have your statement read.
As a patient do you see areas where the professionals sometimes just don’t get it about ME/CFS?
Something I realized recently, I was naïve on this point, is that medical professionals are not usually altruistic. They are worried about their careers. This illness with its horrid name, and mysterious cluster of symptoms doesn’t seem interesting to most health care providers because most of us aren’t dying (we just feel like we are).
But things are changing, although it’s a slow change. When shopping for a new primary physician, I took the CDC toolkit with me. Those who discarded it right away or didn’t seem personable didn’t get hired as my primary. Finally I took the toolkit to avhealthcare provider and by my follow up appointment two weeks later he had read the material and participated in the CME work available. We were able to have a dialog about the illness and now my family practitioner is always amazed at my optimism because he is now aware of the seriousness of the CFS. I think that we as patients must become champions in educating the healthcare providers around us. The IACFS/ME is a great source for speakers if you can get a hospital or medical school to sponsor an educational program. We also need to know that we can fire our doctor and go to someone else. If you have medical insurance you have the luxury of finding a primary who will work with you
Our biggest block with medical professionals is their individual ignorance and hubris.. If you can find someone teachable, then you are very fortunate.
All organizations have their bureaucratic problems but the federal government seems to be in a class of its own. Dr. Bateman said it takes about three years to learn how the system works (and then you’re out of there.) What is your experience here? Does the bureaucracy in federal government really slow the down how fast things get done over there?
AIDS patients were red to symbolize the red tape and bureaucracy of government, this comes from the red tape that was tied around pensions from the Civil War. If soldiers wanted their pension they had to physically go to DC and go through red tape to get their pension. Not much has changed.
Let me give you an example of one bureaucratic problem with our illness, the name. No one likes the name CFS. In Japan they call it “Burnout” I like that more because that’s what I feel like most days. But it still isn’t great. So we all hate the name. But what is the primary (first) complaint of CFS patients – fatigue. The problem is that we as a society think fatigue is being tired. It’s not fatigue is when the muscles have worked so hard they can no longer function properly. So your brain muscle can’t work to help you dial a phone number, or you put the car keys in the freezer. The word is literally correct for our problem but our social use of the word is all wrong.
So for years people have been trying to change the name. I myself like Cheney-Petterson Syndrome, others like Nightigale Syndrome, or ME, or CFIDS.
So we have name change committees and workgroups, and discussions on what the name should be. But who in all the Federal Government decides what the name (and case definition for CFS is? The CDC does. And the CDC won’t change the name, they believe in sub grouping and naming the subgroups, like HHV6.
This is all made worse because CFS has an image problem. We’re not cute like puppies or baby seals, we’re not all children, we aren’t exclusively in the third world, nor are we disaster victims needing one time funds, and it’s not sexually transmitted. So as a pleasure driven society, we don’t really disturb anyone. We’re mostly adults with an illness that sounds like we’re just tired or lazy.
What has surprised you most about being on the Advisory Committee?
The biggest surprise to me how concerned the Department of Health and Human Services is about CFS patients. I have never met anyone in government more interested in CFS patient care and well being than Dr. Anand Parekh, the Acting Deputy Assistant Secretary for Health (Science and Medicine). He is always expressing is concern about hearing the voice of the CFS patient community. Dr. Parekh has spoken to me one on one by phone several times about how to get patients more involved in the CFSAC meetings. For someone of his political heft to be present at any of the CFSAC meetings, shows there great concern about the illness.
I used to think, because I had been told this, that everyone at the CFSAC meetings from government were there only because they were sent there by their departments. It may be true for some of the Ex-Officio members (non voting members of the CFSAC that represent various healthcare agencies), but many are there because they really care and want to help. For example during the last two meetings the need for a new RFA for CFS was discussed. Nothing recommendation was made but we all thought it was important. Well last month the NIH issued a new RFA for CFS.
It’s really appalling how little the NIH and CDC spend on chronic fatigue syndrome (ME/CFS). The NIH is called the National Institutes of Health but it seems to me that they’re more concerned with satisfying the needs of their research community – which by and large isn’t very interested in ME/CFS – than in helping out the millions of desperate ME/CFS patients.
That’s true. The NIH responds to the number of grants they receive and those grants reflect researcher interest. If, for instance, 90% of the grants are for cognitive behavioral therapy (CBT) and those are the best written grants, those are the ones that will be funded. The CDC spending on CFS remains a mystery to me.
The best avenue to change this isn’t going to the CDC or NIH, but going to congress and asking for earmarked funding for CFS research.
Also, let’s face it some of us can donate money to research our illness. You don’t have to give thousands of dollars, I’ve been known to donate five dollars to an organization because it was what I could afford to give. Many of us can donate to funding by skipping a movie, saving pennies, or donating refund checks. I give to several CFS organizations (I don’t have much so they don’t get much). Donate to IACFS/ME to help fund their CME Conferences, which are a great tool for disseminating research information.
Getting researchers interested in this field is a huge problem. The reason most researchers get into this field is because they know someone who has it. Most researchers are not altruistic – they can’t afford to be; they need to be able to publish, to have a career, to put a roof over their head. CFS is not like cancer –Chronic fatigue syndrome is not the kind of field that people enter for fame and glory, it’s the field you entire for career suicide and fighting uphill battles.
But doesn’t the NIH bear some responsibility in this matter? One of the things they could do is build up the field by stating we’re going to provide X number of research dollars for the next five years. Instead they’ve basically left the success or failure of the chronic fatigue syndrome research program to the whims of the research field. Dr. Agwunobi, the DHHS liaison to the CFSAC, said very bluntly and quite memorably that ‘the Institutes (of the NIH) just don’t get it about chronic fatigue syndrome.” Maybe I’m naïve but isn’t there someone who should say “Boy, we’re really obligated to try and help these people?
That’s a tough question, I couldn’t find the quote from Dr. Agwunobi in the minutes to place the context but I will address the rest of the questions. I think the NIH is really trying to help, and I truly believe that Dr. Eleanor Hanna is the reason we have any most CFS funding from the NIH. She is a real champion for this illness. I don’t know that I can say the same for the CDC.
Dr. Bill Reeves isn’t a warm and fuzzy kind of person, he’s a researcher who is saddled with this illness and has become the public face for the CDC in regards to CFS. We tend to make him the villain. I guess every story needs one and with all our suffering as a CFS community it would be nice to have a tangible enemy and not just this illness.
I think we do have people trying to address the problems of CFS, people like Nancy Klimas, and Lenny Jason, and Dan Petterson, and many, many more. But they don’t have the money it takes to solve this problem.
One thing Dr. John Agwunobi said in the July 2006 meeting that I think really applies.
“There are three ways of moving health professionals and infrastructure toward CFS awareness:
- Money, such as insurance reimbursement of certain procedures.
- Science—if there’s a best practice —is a more pressing motivator than money.
- More powerful than emerging science or an emerging funding stream is the demand of patients. An aware citizenry drives demand” (page 22 of the minutes)
We as a CFS community need to be more vocal in our needs, we need to reach out to congress for funding, we need to demand better science when we give public testimony at CFSAC meetings, and we need to become an aware citizenry by telling our story to the media, our neighbors, our families, whoever will listen. Then ask everyone for money to help find a cure for your illness.
That X number of dollars for x number of years needs to come from Congress. There are people accountable to the CFS community, but it’s not the NIH or CDC we have no influence with them. We need to go to our Senators and Congressional leaders and demand accountability from them. As an added bonus many are just now gearing up their re-election campaign and are more open to hearing from their constituency.
It feels like we have most of the puzzle in place. We have great statistics – millions of Americans effected, high levels of disability, extraordinary economic losses., I understand that the slow progress of time will solve everything; that the accumulating research will over time build the field and at some point we will have a robust research effort. My expectation right now is that’ll happen when I’m about 80. What is the missing piece that will get the federal government to sit up and pay attention?
The missing piece of the puzzle is public interest. We’re not refuges, the illness isn’t an STD, we’re not cute. Watch “And the Band Played ON” and see how the AIDS community changed thing. That’s what we need to do. When they had Advisory Committee meetings the room was packed. I don’t think we had more than 10 patients in the room at one time at the last dozen CFSAC meetings. If we don’t participate in solving the problem by voicing our problems and our ideas for solving them then nothing will change.
Do you feel like the Committee is making progress? Do you think you’re making a difference? If so can you point to something that indicates it is?
It may feel like we’re having the same discussion again and again but I think we are making progress. For instance at the last meeting the committee made a recommendation that the Department of Health and Human Services make us aware of tools we can use to educate agency healthcare centers and we got an immediate response. Anyone who’s received a grant from the DHHS will now receive information about CFS. The committee also asked for a new RFA for CFS and that was issued last month.
One problem I see (and I did it when I spoke in the public comment part of the meeting) is that we here problems, but no ideas for how to solve them. Pat Fero is a dynamo and she comes to the meetings having done research on spending, she’s making the NIH accountable for their grants. Mary Schweitzer has addressed access to medicine, the name change and other problems. Marly talks about the legislative and fund raising work of PANDORA. These three patients are at every meeting. The community as a whole should express their gratitude to these people.
What gives the CFSAC power is the number of voters who show up and demand change.
We’ve had better patient turnout at this CFSAC meetings but it’s been pretty dismal for the last couple of years. Is it important that patients turn out?
It is very important. I did some digging and found out that like the other parts of the government that the every advisory committee has measures the government uses to determine if they are doing useful work. One of whether they are turning out recommendations and another is patient attendance. If patient attendance is low the government assumes there’s little interest.
These measures are used by congress, if there is no interest in the CFSAC then it can be expected by Congress that it isn’t an area of priority for funding. If you think that CFS needs more money for research then come to the CFSAC meetings and bring your family and friends.
It wasn’t in real danger because the committee is working very hard and has more work to do. Anand Parekh had promised to get it renewed and it has been.
INTERNATIONAL ASSOCIATION OF CHRONIC FATIGUE SYNDROME/ME (IACFS/ME)
You’re also doing volunteer work with our international professional organization, the International Association of Chronic Fatigue Syndrome/ME (IACFS/ME). How did your work with them come about? Did you just call them up one day and say need any help?
We all have certain talents, mine is to throw myself at whatever problem I see and try to solve it. I’m a classic fixer.
So after my first IACFS/ME conference in Wisconsin, Marly and I went to Nancy Klimas and said we want the next one in Florida. It was a ton of work, and put Marly and I into a yearlong post conference crash, but it was so worthwhile. I encourage every group out there to try to work with this organization and co-sponsor a conference.
I guess because Nancy Klimas is the President of the IACFS/ME, my doctor and my friend I just felt that I should do what I could to help. Plus they are an organization for professionals, and since I want this illness to be taken seriously I see the IACFS/ME as the best way to progress in the healthcare areana.
What are you doing with the IACFS/ME?
I’m using the experience I gained working for non-profits to do grant writing for the IACFS/ME. I kept asking them if they had applied for this or for that grant and they didn’t know about them. So I’m writing up grant proposals for them to, for instance, defray some of the costs to the International IACFS/ME conference in Reno next year.
I’ve also been trying to convince them that they need a paid Executive Director. As our professional organization there’s so much they could be doing but right now they’re an all volunteer organization staffed by already very busy people. They’ve agreed to hire an Executive Director if I can come up with the money. So one of my next projects is raising about $50,000, if you have a few thousand dollars you would like to donate to this project, please contact me at firstname.lastname@example.org.
What specifically would an Executive Director do for them? How would the IACFS/ME having an Executive Director benefit your average ME/CFS patient?
Right now the IACFS/ME is run by the board (all very busy CFS doctors) An Executive Director would be someone with a business or financial background who would run the organization and help it to grow. As the board changes, the Executive Director remain the same so there is continuity. Also there is one person who becomes accountable for running the business.
There are a lot of talented people who can’t work but might be able to contribute something. Are there any ways other ME/CFS patients might be able to assist the IACFS/ME?
Absolutely, first you can join the organization as a patient member; you can also encourage all of your physicians to join the organization so they will have the latest research information about your illness. Money is important, so if you know people with money who care about you ask them to donate to the illness that impacts your life.
Also, the subcommittees of the IACFS/ME can use worker bees. I help on the fundraising committee. But there are other committees. In our health lives we all had different jobs, think about what skill you have that you can use to help the organization and then volunteer.
There’s understandably a lot of anger in the CFS community at our lot. People are just furious at the government or X institution or Y researcher but in the States only a few people show up for the federal advisory meetings or at Lobby Day. It seems like there’s a lot of passion but not a lot of action in the areas that could really affect us.
Patients can be as mad at one researcher or the other as they want but the researchers don’t care. That makes no difference to them. If you want to make a difference you have to go where the money is i.e. you have to ‘hit the hill’ (Capitol Hill). If you can’t physically go to the hill you can write a letter. If you’re lying in bed you can still write a letter or ask one to be written for you. Pick your topic; I can’t find a doctor, there’s no research, I can’t get disability – whatever. The letter should be short and simple – if there are enough letters there will be a resolution.
Because we’re not like AIDS patients – we’re not dying in droves – it’s more difficult for us. If people with HIV weren’t dying we’d still probably not know what causes AIDS. One staffer on the Hill actually told me that this disease doesn’t matter because it’s not sexually transmitted.
Chronic fatigue syndrome (ME/CFS) patients with their post-exertional malaise have more limitations that most people with chronic diseases. How do you balance your obviously strong desire to make a difference and your health needs?
If your only limitation is your health and you’re willing to risk a crash to accomplish something you can accomplish anything. If you’re not then you’re going to accomplish small things. My doctor would kill me for saying this – she’s always telling me to pace myself – but it’s how I get things done. I push and then I crash, but I balance my crash.
Okay so here is my secret tool, I use a pedometer. If I walk more than 8,000 steps in a day I will need a half day to recover, more than 10,000 then I will need a full day. If I go over 12, 000 then I’m out for several days. This is my physical tool.
For mental exercise I use my watch. Two hours is the most time I can give in any given day without a crash. The two day CFSAC meetings result in one day of post meeting adrenaline overload (tons of energy but my mind is useless) and then a good week or two of down time to recover.
The last IACFS/ME conference (five days) which I was really too involved in resulted in almost a month long in bed relapse. I think Marly and I are still recovering and it’s been a year.
You’re still unable to work but you’re out lobbying and doing other things. That obviously bears some risk in the sense of your suffering from a crash and relapsing. Then again it also means that you’re acting pro-actively, that you’re engaged in something important to you and that this disease has not isolated you. Does that in itself provide some benefits?
This is an illness that isolates you. Because it does you really need to reach out or you run the risk of losing your identity and self-esteem and getting depressed. When I saw Paul Cheney he said ‘You need to get a hobby”. I started quilting and I still do it.
I’m stubborn, my family is Slovok and German, so I joke that I get from both sides of the family. I hate doing nothing. When I was at my worst in the beginning of the illness and lying in bed, I was still trying to help an adult friend learn to read. It’s who I am.
So lying in bed or waiting in doctors’ offices I couldn’t believe that there could be this much pain without dying. I was angry that no one could help me. So I decided to try to change things so no one have to suffer as much as I was suffering.
That’s why I lobby and why I push myself. I don’t want anyone else to suffer like I did. The pain was beyond description; the cognitive issues were humiliating, crawling to the bathroom because my vertigo was horrendous for months on end was humiliating. All of my pride all of my accomplishments were for naught. The best movie example is the character Emma Thompson plays in the movie “Wit”, there is just endless humiliation and suffering.
So when I started to feel better I went to my first CFIDS Association lobby day, I was a founding member of PANDORA, I did, and do all that I can so that no one will have to suffer like I did. And all of the relapses are part of the price I pay for my cause, our cause.
I often tell people that for me my energy is like money, and I am energy poor. So I have to spend my energy wisely. I don’t blog or have a website, but I use the few skills I developed before I got sick to try to make the CFS community better with the tools I have. I show up and I ask humbly for help.
My CFS world is small, my friends know that the hour or so they get of my time each month is all I can give to them. I go to the library and get books on tape and I have a therapy pet, okay he’s just a domestic house cat, but he’s there for me when I’m feeling bad. I live with my parents because even with disability insurance and social security disability after I pay for just my medical expenses (like insurance) I only have few hundred dollars each month for living expenses.
But having a small life isn’t that bad, I do what I can on the computer and then I rest. When I have flair up my family understands and lets me rest or be grouchy. They accept my apologies. I have a great CFS doctor, and a local primary doctor who tries to keep up with my illness. For a CFS patient I’m doing very well.
I still dream of recovery, of working full time, of having an active social life, of being “normal”. I don’t know that I’ll ever get these things back, but I’ve learned to be content with what I have and to strive to make things better for others.
Disclaimer – This interview represents my thoughts and ideas and not necessarily the thoughts and ideas of the organizations I am involved with. All comment regarding the CFSAC is made as a member of the general public and not a CFSAC member.