"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.

Affordable Care Act, Supreme Court, May Awareness Month 2012

The U.S. Supreme Court has heard by now both arguments regarding the Affordable Care Act. Many disabled individuals with NEIDs have both Medicare and Medicaid covering their healthcare (dual eligibility).  The arguments for and against the Medicaid mandate expansion to the states about the ACA (Affordable Care Act) were presented by the U.S. Solicitor General Donald Verrilli Jr, and the opposing counsel by Paul Clement. Medscape has been providing daily recaps of the Supreme Court's proceedings regarding the ACA. Florida is the lead state joined by 25 other states. For many experts, the personal or individual mandate that requires the young, the old, the health and the sick to sign up for healthcare benefits creating a large pool is crucial to the affordability of the program. Other experts representing opposing point of view, are saying that the mandate is unconstitutional and therefore if the mandate is found unconstitutional the entire ACA program needs to be scraped.

Many experts have noted that this mandate was for many years embraced and promoted by the Heritage Foundation, a conservative think tank that embraces and promotes conservative values in the U.S. political arena. Many experts also have noted that a similar mandate is already in place in Massachusetts. It was signed by President hopeful and former Governor Mitt Romney. The program in Massachusetts is viewed by a large majority of experts who have been analyzing the program as extremely successful and has kept the affordability of developing the program in check. 

PANDORA recommends to our members to become educated on these important issues. The ACA has answered some of the concerns patients have had to deal with for a couple of decades. No more pre-exisiting conditions, no more caps on life-time coverage. If one is disabled and cannot afford insurance one can join a special insurance pool. Children up to 26 years old can also be kept on the same insurance medical plan of their parents regardless of going to college or not. 

This new access to medical insurance through ACA has in fact neutralized some of the harsh reality that the overall patient NeuroEndocrineImmune diseases (NEIDs) community faces.  The NEIDs patient community has been consistently and often penalized by the medical, scientific and government ignorance of how NEIDs are to be treated. There is also a lack of serious concern leading to a complete lack of priority from the Department of Health and Human Services in the past 3 decades, with no difference whether there is a Democrat or a Republican in the White House or a Congress that is either to the right or to the left of our political spectrum. The harmful effect trickles down to the National Institute of Health, CDC, and other federal government agencies that complement care and quality of life for U.S. citizens are minimal in terms of addressing 3 decades of abandonment and lack of political will from our government officials to fix these serious problems.  

The lack of priority by our federal government regarding NEIDs, then trickles down to the state, municipal and county levels. It crosses over academia causing lack of interest in the science of NEIDS. The lack of physician training and robust scientific research prevents even the basic level of medical care to be provided to NEIDs patients in every state.  The cost of ignorance is higher than the cost of treatments that would benefit the overall NEIDs patient population in the U.S. 

As a citizen of this great country I urge you to learn about the issues and make your voice count.

You owe to yourself to win your future. Neither PANDORA, nor you, and nor I can change the past. However we can change the future. Join us as an Advocate Extraordinaire™ during May Awareness Month in 2012.  Speak up and stand up for the NeuroEndocrineImmune disease you are stricken with loudly and clearly. Support PANDORA and the other hardworking organization serving the NEIDs community in the state where you live and create change. Join the member organizations of the Coalition 4 ME/CFS and the Coalition 4 Fibromyalgia and they will show you how we can all work together across state boundaries toward a comprehensive national policy that will benefit our entire community. 

All of our collective voices, as ONE Community, One Voice, One Cause!™

My Idea on Pepsi Refresh Has Been Randomly Selected-Two More Steps to Go

Click on the link here to find out more

I recently entered another idea on Pepsi Refresh, which I was informed it made through the random selection, meaning that it has met the basic guidelines of the project and it has made through the first step of the charity Pepsi Refresh Project. I sincerely believe the idea is feasible and it will enhance quality of life for many in the NeuroEndocrineImmune diseases community.


The idea is already gathering support from patients, my friends, my family and many patient advocates colleagues, all who are rooting for my idea to move to the next phase: to be posted for public voting. The idea also has the support of PANDORA, of Rocky Mountain CFS and FM Association, CFS Solutions of West Michigan, Phoenix Rising, CFSKnowledgecenter.com for now. As we share the effort with other organizations we hope they will help promote it too. 


Meanwhile, there are a few things in which I could use your help and support. It will take no more than 5 minutes of  of your time. Please go to this web page and choose whatever way you can make your own contribution to promote the idea in deriving community support so my idea can be deemed feasible leading to its successful implementation. 


I also take this opportunity to encourage others to submit their own ideas, which can also benefit the NeuroEndocrineImmune Diseases community to this worthwhile project by Pepsi. It is a great opportunity to create awareness, generate buzz for our community concerns and mostly important to the plight of individuals stricken with these disabling, debilitating and devastating, sometimes fatal diseases. 


Thank you for all that you do. 


P.S.: Check out the new revised international version of the winning PSA (public service announcement) video from ME/CFS Worldwide Patient Alliance on PANDORATV youtube channel. 

  

IRISH MEDICAL TIMES-Doctor letter to the editor shows a remarkable level of arrogance, biases and callousness

I recently came across the link below. It is a letter to the editor to the Irish Medical Times online by a doctor stating his opinion on what I suppose would ME/CFS patient activism.
http://www.imt.ie/opinion/2011/04/the-pace-of-chronic-fatigue.html


The ignorance of this (alleged) physician of the state of the knowledge of the  science for ME/CFS is blatant and high on the level of arrogance, biases, and callousness for his patients. He is yet to catch up to the science! He has no idea what ME/CFS really is. Even the scientific or medical  point of view he attempts to make is clearly exaggerated to the point that it lacks common sense. To this doctor, this disease is a figure of patient's imagination running wild because of the internet.


May he never experience the pain and suffering of what ME/CFS patients have to endure. Because if he falls ill to ME/CFS, and indeed he is at risk simply because of his line of work, well, we could then only hope that a simple act of personal redemption might cure him.


His letter goes along with the comment made last year by one of the members of the Lords Main Chamber in the UK when discussing CFS/ME suggesting it is an uncomfortable illness. There ought to be an award for these types of comments. Does anyone have any suggestions? 

Dr. Monagham, here is our message to you. We are no longer invisible. We will speak up for ME/CFS, since you cannot or refuse to do it. We will continue to require large priority funding for specific biomedical research for this NeuroEndocrineImmune disease in the U.S.  The same must be done in the UK. We will send the message loud and clear and based in the current science. We will get the right answers. Your opinion as an answer to what ME/CFS is, and as it is written in your letter, deserves and has only one place to go and where it clearly belongs- in the circular file. 

Meanwhile, in my subsequent posts I will attempt to share with you as many activities as possible being planned around the Globe to celebrate Awareness Day 2011. I am listing a few on this post.

First, I ask you to join me in DC at the CFS Advisory Committee meeting and on Capitol Hill where we will be delivering a message of hope, determination, resilience, and courage. 

Young people with ME/CFS - "Speak Up About ME", fibromyalgia, chronic Lyme disease and MCS/EI will provide testimony to the CFS Advisory Committee (CFSAC) on May 10 and May 11 in person, by video and by phone. These young individuals will be part of the Advocates Extraordinaire(TM) Advocacy Leadership program culminating with Lobby Days on May 11 for Pediatrics and May 12 for all ages and for NeuroEndocrineImmune diseases. We will be wearing t-shirts that can be purchased here. We ask you that if you are coming in person to do the same.


Time for Action (Robert Miller) is now coordinating a letter to President Obama. RESCIND is also asking patients to write a letter to President Obama and their efforts are complimentary and being coordinated too. 

Tom Hennessy, Jr, was the original creator of the International Awareness Day for NeuroEndocrineImmune diseases (on their site they use the term Chronic, Immunological and Neurological Diseases). We owe Tom our immense gratitude for his determination to to create awareness for ME/CFS. His good friend of many years Jerry Grayson has been instrumental in keeping RESCIND site running all of these years. Thank you Jerry for your dedication to the cause.

We encourage everyone to provide testimony to the CFSAC whether you live in the U.S. or not. We would like to see a long list of individuals providing testimonies along with the ones that will be there in person or are already on the schedule. Send your testimony today and it will be entered in the record. This is your opportunity to tell decision makers about our plight and influence outcome.

  

Be part of 2011 May Awareness Month by participating in the many events found in the U.S. and abroad. Take ownership of your future. Tell decision makers how they can help people with NEI Diseases. It’s up to you. It’s up to all of us.

Join me and together we are: One Voice, One Community, One Cause(TM).

Visit the site of the Coalition4MECFS.org.- A group of ME/CFS non-profit ME/CFS advocacy organization collaborating and dedicated to improving the quality of life of ME/CFS patients. These organizations will engage and mobilize governmental health agencies, the private bio-medical industry, researchers, health care providers and the public toward finding a cure for ME/CFS and related NeuroEndocrineImmune diseases. 

Here are so far the organizations which have joined the Coalition4ME/CFS.org

CFS/Fibromyalgia Organization of Georgia, Inc.
CFS Knowledge Center 

CFS Solutions of West Michigan
PANDORA Inc. - Patient Alliance for Neuroendocrineimmune Disorders Organization for Research & Advocacy, Inc. 

Phoenix Rising

Rocky Mountain CFS/ME & FM Association (RMCFA)

Vermont CFIDS Association Inc.

Wisconsin ME/CFS Association, Inc.

 ME/CFS Worldwide Patient Alliance winning Public Service Announcement video is awesome! This PSA created and produced by Lynn Bousquet will be sent and broadcasted on television and cable channels across the U.S. and abroad in the months to come.

Get your feet tapping at the inspirational video below. YOUR WORLD GETS VERY SMALL when you have Chronic Fatigue Syndrome (CFS) or a similar condition, like Fibromyalgia (FM), Lyme, chemical sensitivities, Myalgic Encephalomyelitis (ME) or Gulf War Syndrome (GWS).

P.S. Click here for a well thoughtful answer from Jane Colby, FRSA,Executive Director,The Young ME Sufferers Trust,Holder of The Queen’s Award for Voluntary Service, and click here to read some of the comments on Facebook including now letters from physicians addressing this (alledged) doctor's letter to the editor of the Irish Medical Times. 

BELOW ARE PICTURES OF PAST AWARENESS DAY EVENTS - Conferences, meetings, proclamation day letters and special fund raising events.