Chronic Fatigue Syndrome: Are we really just bitter?

A couple of weeks ago a member of the me-cfscommunity.com, shared with me an article that was posted on ABC News online, that lumped chronic fatigue syndrome (CFS) with 7 other illneses that they deemed "weird" and/or controversial. Here is a solid response from Beth Gilbert a member of our board of directors. Beth contacted the doctor who was quoted on the article and if you want to know what transpired, you need to read Beth Gilbert's article. Read on and share it!

Chronic Fatigue Syndrome: Are we really just bitter?

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IT IS TIME FOR CHANGE - Part IV

As part of the IT IS TIME FOR CHANGE grass roots initiative it is important to share with you the following CDC response that was posted (modified on Sept 1, 2009) on the CFS CDC program web site:

Input on CDC CFS Strategic Research Plan
"Between April 15 and July 30, 2009, CDC received just over 1,000 e-mails in response to a request for input to its 5-year CFS strategic plan. Most of the e-mails utilized material from the CFIDS Association of America’s Web site or supported CFIDS recommendations, reflecting the effectiveness of CFIDS advocacy efforts. We greatly appreciate this overwhelming response, since it provided an opportunity for members of the CFS community to share their concerns.

Some emails from the general public provided comments specific to the strategic research plan and we also received comments on the strategic plan from two scientific societies (the International Association for Chronic Fatigue Syndrome, and the American Academy of Environmental Medicine), scientific investigators, health care providers, and patient advocacy groups (CFIDS Association of America, Pandora, Connecticut CFIDS & FM Association, National Women´s Health Network, Rocky Mountain CFIDS/FMS Association, Phoenix Rising, Wisconsin ME/CFS Association, Share Care & Prayer, CFSActs, National CFIDS Foundation, Invest in ME - UK).

CDC´s CFS research program is currently categorizing comments concerning the strategic plan into specific subject areas."

To see the full CFS Public Health Research Program Draft 5-year Strategic Plan, click here.


Pro-Health Library also posted on September 8, 2009 a short article stating that"CDC to Present 5-Year Research Plan Oct 29-30 at CFS Advisory Committee Meeting", In the article they also referred to Dr. Leonard Jason's position on the empirical CDC CFS definition.

I have not seen an announcement from the CDC regarding what their next move will be. I suppose it takes time to compile the response of the stakeholder's meeting. I am sympathetic to that. Individuals familiar with our advocacy community have been told that positive changes will be made at the CDC, but no lay out of a more specific plan regarding the leadership and or the management team of the CFS CDC program has been announced.

It is known and customary that at every CFSAC meetings there is always a report presentation from the CDC ex-officio member. I suggest that what our community needs to do is to pack the room at the DHHS on October 28-29. Patient advocacy organizations need to send at least one representative to attend the Oct 28-29 meeting. Patient, family members and physicians treating CFS patients and other neuroendocrineimmune disorders (NEIDs) need to send in their testimonies by emailing them to cfsac@hhs.gov.

This is a most auspicious opportunity and we cannot let that go unnoticed. I am hoping that the Empty Chair Project will not have to be displayed once again at the next CFSAC meeting to highlight once again how empty that room is without patient advocates.

IT IS TIME FOR CHANGE... to be continued

IT IS TIME FOR CHANGE - Part III

For two and half decades the CDC direction regarding the CFS research program, which includes prevention, course of treatment, medical provider education and public information has been controversial, divisive and spotty at best.

P.A.N.D.O.R.A.- Patient Alliance for Neuroendocrineimmune Disorders Organization for Research & Advocacy, Inc, a charitable (501 c 3) organization advocating for the chronically ill and an organization that I support, is launching a nationwide & international advocacy alliance with strategical partners around the world, for the main purpose for the establishment of Neuroendocrineimmune Disorders Research Centers in the U.S. and overseas. This is the first poll of a proposed 10 single poll questions. If you have not participate please do it now.

Click here or cut and past the link below in your browser to answer the single poll question:
http://survey.constantcontact.com/poll/a07e2j0j8jpfvjw46k4/start.html

P.A.N.D.O.R.A. along with the strategical partners' alliance will then take the answer results to the CDC, to Congress, to the National Institute of Health (NIH), to the Social Security Administration, to the Department of Health and Human Services (DHHS) officials and other interested parties. So please join me, and our voices will be stronger.

ONE VOICE, ONE COMMUNITY, ONE CAUSE!

NOTE: Here in my blog there is also another single poll question that I ask everyone to participate. P.A.N.D.O.R.A. will be taking the answers to the legislators in the state of New Jersey as we address the overlapping of neuroendocrineimmune disorders and its relations to other chronic emerging illnesses.


IT IS TIME FOR CHANGE!...to be continued

IT IS TIME TO CHANGE - Part II -October 29-30 Next CFSAC Meeting in Washington DC- Department of Health and Human Services (DHSS)

Federal Register date announcement for the next Chronic Fatigue Syndrome Advisory Committee (CFSAC) meeting. We need to ensure once again attendance to this important meeting will continue to increase.

It is Time for Change.
We need to fill each chair in the meeting's room with individuals from all every regions of our country to speak loud and clear that progressive changes have to be made within DHHS and its institutes, agencies that will advance the science in neuroendocrineimmune disorders and more specifically on CFS-ME.

Can PANDORA count on you to be there? We are creating a communication list to make sure we coordinate a national effort to fill the room and show our support for the CFSAC and their recommendations. We will be asking for a meeting with the Secretary of Health either on Oct 28-29, 2009 to share our UNITED message. IT IS TIME FOR CHANGE!

[Federal Register: September 4, 2009 (Volume 74, Number 171)]
[Notices]
[Page 45857]
From the Federal Register Online via GPO Access [wais.access.gpo.gov]
[DOCID:fr04se09-63]

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DEPARTMENT OF HEALTH AND HUMAN SERVICES
Meeting of the Chronic Fatigue Syndrome Advisory Committee
AGENCY: Department of Health and Human Services, Office of the Secretary, Office of Public Health and Science.

ACTION: Notice.

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SUMMARY: As stipulated by the Federal Advisory Committee Act, the U.S. Department of Health and Human Services is hereby giving notice that the Chronic Fatigue Syndrome Advisory Committee (CFSAC) will hold a meeting. The meeting will be open to the public.

DATES: The meeting will be held on Thursday, October 29, 2009, and Friday, October 30, 2009. The meeting will be held from 9 a.m. until 5 p.m. on both days.

ADDRESSES: Department of Health and Human Services; Room 800, Hubert H. Humphrey Building; 200 Independence Avenue, SW., Washington, DC 20201.

FOR FURTHER INFORMATION CONTACT: Wanda K. Jones, Dr.P.H.; Executive Secretary, Chronic Fatigue Syndrome Advisory Committee, Department of Health and Human Services; 200 Independence Avenue, SW., Hubert Humphrey Building, Room 712E; Washington, DC 20201; (202) 690-7650.

SUPPLEMENTARY INFORMATION:
CFSAC was established on September 5, 2002. The Committee was established to advise, consult with, and make recommendations to the Secretary, through the Assistant Secretary for Health, on a broad range of topics including (1) The current state of the knowledge and research about the epidemiology and risk factors relating to chronic fatigue syndrome, and identifying potential opportunities in these areas; (2) current and proposed diagnosis and treatment methods for chronic fatigue syndrome; and (3) development and implementation of programs to inform the public, health care professionals, and the biomedical, academic, and research communities about advances in chronic fatigue syndrome.

The agenda for this meeting is being developed. The agenda will be posted on the CFSAC Web site, http://www.hhs.gov/advcomcfs, when it is finalized. In addition, the meeting will be WebCast. Details will be posted to the CFSAC Web site as they become available.

Public attendance at the meeting is limited to space available. Individuals must provide a photo ID for entry into the building where the meeting is scheduled to be held. Individuals who plan to attend and need special assistance, such as sign language interpretation or other reasonable accommodations, should notify the designated contact person. Members of the public will have the opportunity to provide comments at the meeting. Individuals who wish to address the Committee during the public comment session must pre-register by October 14, 2009. Any individual who wishes to participate in the public comment session should call the telephone number listed in the contact information or send an e-mail to cfsac@hhs.gov to register. Public comments will be limited to five minutes per speaker.

Members of the public who wish to have printed material distributed to CFSAC members for discussion should submit, at a minimum, one copy of the material to the Executive Secretary, CFSAC, prior to close of business on October 15, 2009. Submissions are limited to five typewritten pages. Contact information for the Executive Secretary is listed above.

Dated: August 20, 2009.
Wanda K. Jones,
Executive Secretary, CFSAC.
[FR Doc. E9-21334 Filed 9-3-09; 8:45 am]

BILLING CODE 4150-42-P

Be a Guest Blogger! : Invisible Illness Awareness Week

NICIAW is Sept 14-20, 2009 and you can find out more info at www.invisibleillnessweek.com . They are having a 5-day virtual conference with 20 speakers giving seminars. -Be a Guest Blogger! : Invisible Illness Awareness Week

They are looking for guest bloggers. "Are you interested in having a special blog post you’ve written about living with illness (especially an invisible one?) We’d love to consider it! Please submit it here and we will respond as soon as possible. If it’s accepted we will let you know the date it will appear. And yes, it’s okay if it’s been reprinted before. Just let us know when and where."

This is a great opportunity to show off your own blog and be part of something special. Tell Lisa that Marly Silverman, from PANDORA is grateful for the great work that they do.

IT IS TIME FOR CHANGE - Part One

You are aware that P.A.N.D.O.R.A. the patient advocacy organization I represent embraces the concept of neuroendocrineimmune disorders. But today I want to specifically target one of these illnesses – Chronic Fatigue Syndrome or ME, as it is known in Europe and other countries.

The reasons why I am highlighting CFS-ME is simply because of the major historical opportunity that is being augmented by the upcoming CFS Advisory Committee (CFSAC) October 2009 meeting at the Department of Health and Human Services (DHHS) headquarters in Washington DC. You may or not be aware but at the May 27-28 meeting, a historical set of events occurred – The CFSAC gave a “thumbs down” to the current Centers for Disease Control and Prevention (CDC) leadership in charge of the CFS scientific research and public education programs.

This move was expressed quite well on their number one recommendation: ”Establish progressive leadership at the CDC that can achieve efficient meaningful progress in CFS research, clinical care and education.” You can click here to read the full set of recommendations at that meeting.

I say again historical, because the IACFS-ME Association also gave a “thumbs down” to the CDC leadership, followed by the CFIDS Association of America, Inc, one of the largest CFS patient advocacy groups in the U.S. Never ever have I been told, (and since I was diagnosed with CFS-ME in 1998 – a mere 11 years compared to many who have had this diagnosis for 25-35 years), have these major players agreed in something so fundamental.

It does not escape from us either, that the CDC stakeholder’s meeting held on April 2009 generated a barrage of other organizations and individuals stating their “thumbs down” for the 25-30 year performance of the CFS research & public education programs at the CDC as well. I represented P.A.N.D.O.R.A. by delivering a short presentation (later expanded) of our concerns based on the requested input outline. Many other individuals, and astutely so, saw the opportunity to also deliver a scathing message to the decision maker officials at the CDC that the current CFS program has not had for a long time, the support, the trust and the much needed vote of confidence of the patient advocacy community. Now, as it seems, the CDC does not have the crucial vote of confidence either from the scientific and medical community as well.

After reading John Herd’s latest blog on me-cfscommunity.com, I decided to postpone today’s original posting for a later day. Instead I decided to write about this important issue and about some other ideas that have been brewing on my CFS-ME-FM brain: how to create a social public awareness event that would mobilize our nationwide community if not worldwide, raise funds, generate media interest, touch the heart of lawmakers and just as importantly, reach the decision makers at the Department of Health and Human Services (DHHS) and at the Centers for Disease Control and Prevention (CDC).

While I will not engage in personal attacks, nor demonize individuals whom I have had the opportunity to meet and I have learned to respect, I do too believe IT IS TIME FOR CHANGE. It is time for a significant change to be made by the decisions makers at the CDC so CFS research can be progressive and yield better and greater results. It is time for the CDC to take its losses, re-organize, re-vamp and move on! For far too long the CFS-ME patient community has been suffering greatly.

But how do we convey this strong message? One idea that came to my mind was inspired by Joshua Tabb who blogs for The Case Foundation. Joshua shared on his blog article Learn the Lingo: F is for flash mob, mobilizing your mob. So the idea is to do something that is related to our community of suffering that will create awareness to the plight of millions of Americans and many other millions worldwide. What it would be? Folks wearing a t-shirt saying IT IS TIME FOR CHANGE with a pretty logo and lying down in nearby mall? How about wearing a mask and freezing for a flash moment? How about doing a line dance? How about holding hands? Perhaps we should all carry letters that at a signal, we would raise them to read IT IS TIME FOR CHANGE or to read One Community, One Voice, One Cause. But the key point of "flash your mob" is to create a moment in time a very short time (5 minutes or so) that occurs peacefully, quietly, but leaves an indelible mark in the public & government consciousness.

So I guess all I have to say now, is that I may not know much,but this much I instinctively know... IT IS TIME FOR CHANGE. I think you will agree.