"Us and Them" is Phasing Out

(Last guest blog from Tina Tidmore about the June CFSAC meeting.)

I've watched local, state and national politics, as well as the first "Survivor" show to see how people gain power to win against those who disagree. The ones who have extreme views tend to be the loudest and get the most attention. They pull at those closer to the middle to bring them to the extreme view. As they pull, the bring the people in the middle away from those with opposing views. The end result is two opposing groups who are angry and throwing stones at each other. It becomes a power struggle of who can get the most support and they try to squash the opponent by shear force.

In these situations, I notice that the majority is often in the middle on the issue. But they don't have strong feelings, so they are silent. What's missing is the dialogue. If the ones who are close to the middle on both sides start talking with each other, then they may find they almost agree. But the power struggle prevents this dialogue, where a solution and movement takes place.

In the history of the CFSAC meetings, the patients were on the other side of the table, creating an "us" feeling. (Exception is the one patient advocate on the committee.) The committee members, were "them." So we had an "us" and "them" set up.

The June 2012 meeting was different. The CFSAC administrators arranged for a dialogue from teenager patients and committee members. Talking to each other is better than throwing stones. Although, a few stones may be needed to get their attention. But openness is needed to listening with the heart. And if the person is in defensive mode, they aren't being open.

They got another patient advocate on the committee, a doctor who is an anesthesiologist.

They are working on the by-laws for organization reps to be on the committee, to be included in the discussions of the committee. (This may prevent the urge to yell out during the meeting.) This is great.

While it's great to have more patients participating in the committee discussion instead of just preaching, pleading or hurling at them, care should be taken to not become dependent on government agencies to do their work. The organizations must keep independence so they never become beholden to the government, even in a partnership agreement. They must always be advocates whether they are in the peanut gallery or sitting with CFSAC members as part of the committee. They must never fear losing power or position and fail to speak. This would be a betrayal. But it doesn't have to be on the outside. Advocacy does not mean adversarial. Advocacy can be done while sitting and talking with those who disagree.

If you see ME/CFS patients or organizations reps talking to some who you disagree with, don't think it is because they agree with them. Think they are trying to persuade them in a less formal way.

The CFSAC administration is also trying to get ME/CFS out of the fringe. The researchers and clinicians, evidently, are not mainstream enough to have credibility among others. The suggestion is to get representatives of physician organizations involved in the process for forming new criteria. We faced another conundrum: to get the new definition accepted, need to bring these associations of ignorant, possibly biased clinicians, to the table to be part of the discussion and the decision. But, they may mess it up if they have any say in the process.

The idea discussed at the June 14 meeting is to educate them first. Then have them be included in the process. Scary, isn't it. But, as long as ME/CFS researchers and clinicians are considered "out there" by their peers, then we won't change these associations and the physicians who are members. We must include these associations if we are to get ME/CFS mainstreamed. We must remove the "us" and "them" attitude and actions. We need to get them to carry our message for us, for our clinicians and researchers do not have the credibility as the leaders of these associations. I really appreciate the FDA ex-officio bringing this out in the June 14 meeting.

A wise ME/CFS patient explained a common way change happens.
1) Folks get mad and take to the streets with their demands.
2) They go too far and demonstrations turn violent
3) After the mess is cleaned up by authorities, the suits (more moderate and professional-acting folks in the movement) meet with the opposition to work out the changes.

This is what I have seen at the June CFSAC meeting. It's good we are now past stage 1, 2 and now are at stage 3.

Another thing I learned for sure from this CFSAC meeting is that I definitely have a southern accent. All doubts have been removed. I was reminded of it often. So, whether by radio interviews or at CFSAC meetings, I will use my southern drawl to persuade. And if I have to, I will publicly and boldly correct the ignorant and the biased - bless their little hearts.

The Train is Moving

(Another guest blog from Tina Tidmore)

For years, the CFSAC seemed to be stuck in stagnation. Ex-officios seemed not too interested, nor did they appear creative. Committee members felt much frustration. The hardest part is getting the train to move from inertia. A lot of fuel is needed to move such dead weight into action.

However, two years ago, the XMRV claims provided the fuel that got that CFSAC train going. It's slow, as it leaves the station. The question is, who will answer the call "All aboard"? So, what movement is being shown in the government agencies as revealed in the June 13 CFSAC meeting?

• The FDA has 8 applications. Two are from private companies and the others are from investigators.
• Lipkin study on XMRV will be published within a few weeks as a "white paper" and then as a peer-reviewed paper.
• Some CFSAC members also criticized the CDC toolkit.
• CDC has made some changes to their website and will be doing more. They will be adding a section on pediatrics.
•  The CDC is looking for ways to continue a dialogue with patient organizations. They have met with many in the last year.
• The CDC participated in a pathogen study, found nothing, although it was just plasma.They recognize that it is not conclusive on the pathogen question. They are working with 7 well-known ME/CFS physicians to do research on their patients. They discovered an abnormal response in the brain of ME/CFS patients in research that was presented as abstract at a conference.
• CDC is creating a CME course for clinical care that will be finished on June 20 and one on CFS and sleep that will be available on July 8. They worked with some well-known ME/CFS physicians to do this. The CDC will be working with the Center for Advance Professional Education company to come up with a curriculum for medical school.
• The Assistant Secretary of Health Dr. Howard Koh is wanting to improve communication with patient organizations and have their representatives on the committee.
• The FDA has centralized where the CFS applications go and have educated those who review them. They received the CDC toolkit, but they also received the IACFS/ME Physician Primer.
• Koh arranged for an ad hoc committee of government agency reps. to have meetings on what they can do for the patients with this illness. A national webinar and a national patient registry have been discussed in those meetings.
• Live videostream of the meetings returned, despite the continued financial cuts in the DHHS.  

Besides these progress reports, a new arrangement happened where a panel of patients had a dialogue with the committee. The committee members could ask these teenagers and a parent of an ME/CFS patient questions and the panelists could ask the committee members questions. As far as I can remember, this is a first and shows an openness to patient concerns instead of defensive posturing.

We all were very concerned with the new members, especially with the loyal and vocal Dr. Nancy Klimas, Dr. Chris Snell and Dr. Lenny Jason all leaving at the same time. However, these new members got a crash course today with a wonderful look at the biological findings in ME/CFS pediatric patients, as described by Dr. Peter Rowe. And they got to know the extreme injustice and suffering - not only from the disease but from an ignorant and uncaring system - as revealed in the moving testimony of some of the young ones and their parents. From some of their comments, I have concern about one, but the others are on board. That one, I think will come around. So, those who understand the illness are still in the majority. And they are speaking up too.

Tears flowed when the mother spoke of her daughters and the struggle to get the accurate diagnosis, and then find out the proper treatment and also make sure they get an education. As one slap in the face after another, or one injustice after another, the woman sitting to might right said, "Oh my God." And the woman sitting to my left said, "Oh God." Back and forth they went as the family's tragedy was told in all its gory details. Certainly, while we hear these stories again every time, CFSAC members must be reminded that this is not play. We are dealing with life and death here. The new ones need to know this and the old ones need to be reminded at every meeting.

Additionally, many patient organizations and patients signed a joint letter of concern with four primary objectives and a request to meet with Sec. Sebelius, Dr. Howard Koh and Dr. Nancy Lee. They can no longer say, "But the patients are divided in what they want." Not true. These many patients and organizations found areas where they agree and are pushing for that.

Importantly, the CFSAC members are considering endorsing the IACFS/ME Physician Primer and recommend it be distributed. How wonderful! Attorney Steve Krafchick asked, "Why invent a new toolkit when you have a primer?" Krafchick said the CDC physician toolkit is very superficial and the treatment section can be taken out.

For years, the CFSAC seemed to be stuck in stagnation. Ex-officios seemed not too interested, nor did they appear creative. Committee members felt much frustration. The hardest part is getting the train to move from inertia. A lot of fuel is needed to move such dead weight into action. 

However, two years ago, the XMRV claims provided the fuel that got that CFSAC train going. It's slow, as it leaves the station. The question is, who will answer the call "All aboard"? So, what movement is being shown in the government agencies as revealed in the June 13 CFSAC meeting?

• The FDA has 8 applications. Two are from private companies and the others are from investigators.
• Lipkin study on XMRV will be published within a few weeks as a "white paper" and then as a peer-reviewed paper.
• Some CFSAC members also criticized the CDC toolkit.
• CDC has made some changes to their website and will be doing more. They will be adding a section on pediatrics.
•  The CDC is looking for ways to continue a dialogue with patient organizations. They have met with many in the last year.
• They participated in a pathogen study, found nothing, although it was just plasma.They recognize that is it not conclusive on the pathogen question. They are working with 7 well-known ME/CFS physicians to do research on their patients. They discovered an abnormal response in the brain of ME/CFS patients in research that was presented as abstract at a conference.
• CDC is creating a CME course for clinical care that will be finished on June 20 and one on CFS and sleep that will be available on July 8. They worked with some well-known ME/CFS physicians to do this. the CDC will be working with the Center for Advance Professional Education company to come up with a curriculum for medical school.
• The Assistant Secretary of Health Dr. Howard Koh is wanting to improve communication with patient organizations and have their representatives on the committee.
• The FDA has centralized where the CFS applications go and have educated those who review them. They received the CDC toolkit, but they also received the IACFS/ME Physician Primer.
• Koh arranged for an ad hoc committee of government agency reps. to have meetings on what they can do for the patients with this illness. A national webinar and a national patient registry have been discussed in those meetings.
• Live videostream of the meetings returned, despite the continued financial cuts in the DHHS.  

Besides these progress reports, a new arrangement happened where a panel of patients had a dialogue with the committee. The committee members could ask these teenagers and a parent of an ME/CFS patient questions and they could ask the committee members questions. As far as I can remember, this is a first and shows an openness to patient concerns instead of defensive posturing. 

We all were very concerned with the new members, especially with the loyal and vocal Dr. Nancy Klimas, Dr. Chris Snell and Dr. Lenny Jason all leaving at the same time. However, these new members got a crash course today with a wonderful look at the biological findings in ME/CFS pediatric patients, as described by Dr. Peter Rowe. And they got to know the extreme injustice and suffering - not only from the disease but from an ignorant and uncaring system - as revealed in the moving testimony of some of the young ones and their parents. 

Tears flowed when the mother spoke of her daughters and the struggle to get the accurate diagnosis, and then find out the proper treatment and also make sure they get an education. As one slap in the face after another, or one injustice after another, the woman sitting to might right said, "Oh my God." And the woman sitting to my left said, "Oh God." Back and forth they want as the family's tragedy was told in all its gory details. Certainly, while we hear these stories again every time, CFSAC members must be reminded that this is not play. We are dealing with life and death here. They need to know that even in America, the sick are being mistreated and they must stop it. These stories give them the motivation to act with courage.

In acting with courage, they will be imitating some of the patients themselves. As the first one on this day, first time for her to give testimony, spoke boldly, even shocking some in the audience. This slender and petite woman, did not shrink back or filter her words. Her trembling from the situation only showed how great her passion and courage was to stand up and declare a wrong has been committed.

The fears of the new members seem to be unnecessary as seen from some of their comments. During the breaks, I got to speak to some. One of the new members told me he thinks he might need to call some of his former ME/CFS patients to suggest helpful treatments he learned at the meeting. They get it, or they are getting it.

Even Dr. Gaillen Marshall, the new chair, made a striking opening remark. He acknowledged the concerns some had in his being in the chair's seat. He said he sees holistic, integrative and personalized care as being applicable to this disease. "Most diseases are syndromes," said Marshall. He said cancer, diabetes and others are one disease, but with subgroups. "Not all have the same symptoms, even if they are the same disease," Marshall said. While other diseases have seen much progress, ME/CFS patients are still waiting, still asking. After the very profound and deep comments from Matthew Lopez-Majano, Marshall said that they will not grow to be old and have the same disability as they do now with the disease. "There is a light at the end of the tunnel," he said.

Also, new in this meeting, many patient organizations and patients signed a joint letter of concern with four primary objectives and a request to meet with Sec. Sebelius, Dr. Howard Koh and Dr. Nancy Lee. They can no longer say, "But the patients are divided in what they want." Not true. These many patients and organizations found areas where they agree and are pushing for that. 

Importantly, the CFSAC members are considering endorsing the IACFS/ME Physician Primer and recommend it be distributed. How wonderful! Attorney Steve Krafchick asked, "Why invent a new toolkit when you have a primer?" Krafchick said the CDC physician toolkit is very superficial and the treatment section can be taken out.

As this train starts to move. We must acknowledge that action is being taken. But that does not mean we don't need to give more fuel. It is still slow. We want - the situation demands - that the train move much faster. So, patients must still push for more improvements. But, as it moves, it will get easier and easier and the momentum will begin to help it along. To all, patients, organizations and government agencies and the CFSAC, have you answered the call. Are you on board?

You Are Not Alone

(from Tina Tidmore, guest blogger)

As I sit in a hotel room, listening to 12 other people discuss their experiences with ME/CFS, I can't help but think of the other group of patients in cyberspace. The young people here share their stories of dealing with school, ignorant physicians and the joys of finally finding someone who can help. "That's just like what happened to me," is a phrase that shows a connection and an understanding that patients experience only with other patients.

Hearing a 16-year-old talk about ATP and coxsackie virus shows that ME/CFS is really its own world, with its own language and its own citizens and celebrities. Stories of different doctors and their treatments actually shows we are really like a family. Dr. Dennis Mangan, formerly of the NIH, said the ME/CFS researchers and patients together are like a family, maybe a dysfunctional one, but still a family.

Here in this room, we have no dysfunction. We have laughter, understanding, patience (and patients) and a camaraderie. Not only do we have the patients sharing with each other, we have parents who share their own trials and victories. One mother tells her story and breaks down in tears. Quickly, another mother comes to hug her. Ten minutes later, loud laughter fills the room. And we even have a little bit of strategy talk. It's like a large group of people who just discovered others of their kind.

What is most interesting to me is that these names who are attending are not the same names I see in the ME/CFS cyberworld. I asked some, why don't I see you on the message boards, Facebook, talking to other ME/CFS patients online. One young man said he has seen some improvements in his health. He still wants to help the cause, but for his own emotional, and therefore his physical health, he had to disconnect himself from the day to day drain. The ME/CFS cyberworld can be very demanding, even caustic.

I certainly understand that. After many battle scars, I left from doing government, crime and corruption coverage for the local newspaper. I told the publisher I was not ready for pasture, but I emotionally and physically could not be on the front lines any more. Evidently, the same thing can happen with ME/CFS advocates. We must protect our health first. And we should appreciate anything anyone does because we know it comes with a prices.

I also hear some of the young people who say that while they want to advocate for other young ME/CFS patients, they need to fill their time between the CFSAC meetings actually thinking about and doing (as they can) things that are not disease-centric. These young people want a life of school, friends, and more. So, as they can, if they can, their precious little energy is spent on living.

I posed the question of why there is such a difference in the ME/CFS cyberworld, with people daily looking for and commenting on the littlest nugget of news on the disease. The consensus is that some of  our disease brothers and sisters have lost much of their life. Their friends and jobs and more have all disappeared. All they have is their computer screen, their window into the rest of the world, a world they can not participate in, only comment on. Frustrated, they want it to change. But without the creativity that some have found to do something constructive online, it only leads to anger. Thankfully, it seems to be less than it was a year or two ago. But that anger is still there.

My lesson from tonight's gathering in this hotel suite, and from what we see in the ME/CFS cyberworld, is that we must protect our emotional and physical health. If that means we are part-time advocates, then so be it.

Tonight, all of us - those in the ME/CFS cyberworld and all those who fight the battle at the CFSAC - can go to bed and rest with the peaceful knowledge that we are not alone.