Pay it Forward For ME

Article courtesy Sue...

Wed, 03 Apr 2013 13:04:00 -0400

Article courtesy Sue Jackson

http://livewithcfs.blogspot.com/2013/04/two-ways-to-help-mecfs-treatment-move.html

Two Ways to Help ME/CFS Treatment Move Forward

On April 25-26, the U.S. Food & Drug Administration (FDA) will be holding its first-ever FDA Workshop on Drug Development for Chronic Fatigue Syndrome (CFS) and Myalgic Enchephalomyelitis (ME) in Bethesda, Maryland. This is our big opportunity to teach the FDA all about the severity and effects of ME/CFS and our urgent need for effective treatments.

The meeting is open to the public, though of course, many ME/CFS patients are too sick to attend. However, even if you are bedridden, there are two ways that you can help in this momentous event. Two different surveys have been launched to collect patient data, and the more patients that respond, the more impact we can have in convincing the FDA that there is an urgent need for medications designed specifically to target the unique complexities of ME/CFS.

The CFIDS Association is conducting a survey based on the questions FDA posed in the Federal Register noticefor the Workshop. Responses to the survey will be collated and presented at the workshop. It consists of open-ended questions (full sentences not required - brief responses or bullet points are fine) and will take between 30-60 minutes to complete. Follow this link to begin the CFIDS Association survey.

The second survey has been designed by Dr. Lily Chu and Dr. Leonard Jason, who will be participating in the FDA workshop. Dr. Chu will present the results of this survey to help teach the FDA about ME/CFS from the patients’ point of view. This survey is multiple choice with some room for additional comments and should take about 30-40 minutes to complete (mine only took 25 minutes to complete). Responses are needed by April 17 to be included in the FDA meeting, but the survey will remain open until May 10, and all responses included in a report.Follow this link to begin the Chu/Jason survey.

If you can manage both surveys, great - they are different surveys and they can use all the patient input they can get andthe more responses they get, the more meaningful the data will be. If you can only manage one, just choose one - your participation will be helpful either way.

You can also participate directly in the meeting in person or by giving public comment. This blog post from Occupy CFS provides details and links (I also borrowed heavily from another Occupy CFS post for the survey information above since I haven’t been feeling well lately - thanks, Jennie!)

This FDA workshop is a big deal, so help out however you can!

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chronicillnesscat: [Image: 6-piece blue colored background with...

Tue, 19 Mar 2013 23:46:39 -0400

chronicillnesscat:

[Image: 6-piece blue colored background with a Siamese cat.Text reads: “Every healthy person knows exactly how I should fix myself.”]

neptunesummer: YES. OMG. I’M ON SPRING BREAK RIGHT NOW AND I’VE...

Tue, 19 Mar 2013 23:46:11 -0400

neptunesummer:

YES. OMG. I’M ON SPRING BREAK RIGHT NOW AND I’VE LITERALLY DONE NOTHING.

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neptunesummer: When you have an illness, sometimes you have to be selfish and just focus on...

Tue, 19 Mar 2013 23:45:33 -0400

neptunesummer: When you have an illness, sometimes you have to be selfish and just focus on...

its-a-spoonie-life: When you get excited cause you’re seeing a new specialist cause they might...

Tue, 19 Mar 2013 23:45:27 -0400

its-a-spoonie-life: When you get excited cause you’re seeing a new specialist cause they might...

d3ssins: untitled on Flickr.

Tue, 19 Mar 2013 23:43:48 -0400

d3ssins:

untitled on Flickr.

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http://www.facebook.com/events/121302214705174/ Why not support...

Wed, 16 Jan 2013 21:53:00 -0500

http://www.facebook.com/events/121302214705174/

Why not support help us have more treatment options?

Online Email Campaign- per ME Advocate Robert Miller
URGENT: ME/CFS Patient “A C T I ON” for Patients, Family and Friends

Organizers: Robert Miller Patient/Advocate, Cort Johnson (Health Rising), Billie Moore Patient Advocate and Team
Contact: 511bobmiller42@gmail.com

On December 20th, ME/CFS patients rose to the Challenge and Sent in 750 personal testimonies to the FDA Advisory Committee, requesting for Ampligen approval. 30 Patients, family and clinicians testified. The final vote was split, the panel will recommend to FDA to not approve Ampligen on 3 questions, but voted Yes, that Ampligen’s safety profile is adequate for approval on a 4th question .

So We Must “ACT”. This ACTION will be emailing the contacts below Everyday until FDA approval. We deserve treatment Now. The Final decision date is February 2nd , but it could come any day. We all need to start emailing Today and Everyday.

(The template below is for you to follow, you can just copy and paste for ease.)

Email Contacts Are:
HHS Secretary Katherine Sebelius, FDA Commissioner Margaret Hamburg, Director Janet Woodcock, Deputy Director Sandra Kweder, Senator Richard Blumenthal, Senator Kay Hagen, Congressman Joseph Pitts
_________________________________________________________
From: PLACE YOUR EMAIL ADDRESS HERE
To:Kathleen.Sebelius@hhs.gov,margaret.hamburg@fda.hhs.gov,janet.woodcock@fda.hhs.gov, Sandra.Kweder@fda.hhs.gov,Monica.volante@mail.house.gov,
CC:Karen_Wade@hagan.senate.gov,Eamonn_Hart@blumenthal.senate.gov, 511bobmiller42@gmail.com
Subject: Approve Ampligen Now

———————————————————————————————————————————
From: PLACE YOUR NAME HERE
The FDA should approve Ampligen by Feb 2, 2013. The advisory committee voted that Ampligen’s safety profile is adequate for approval. Patients and our physicians must have the opportunity to access a treatment that has shown such promise for ME/CFS patients. Failure to do so will leave us with no FDA approved options to treat this disease.

The FDA has stated that ME/CFS is a serious and life threatening disease. Yet, without treatment, patients and their families are left to suffer. Many of us are bedbound or homebound. We are in constant pain and suffering, abandoned to bodies that torture us every day and demands that we parse out our activities like a single piece of bread that must last for a month. According to a DePaul study, patients are more likely to die prematurely from cancer, heart failure or suicide. This is the long-term reality of living, untreated, with ME/CFS. Imagine living with an untreatable disease so terrible that you would choose suicide to escape it.

750 written and over 30 in-person patient testimonies, including that of the AAC patient representative, conveyed how this devastating disease impacts our lives and the imperative of weighing the opportunity to benefit against the risk of no treatment to escape from this terrible physical burden and get back even a piece of our lives.
For us, even small improvements have a very significant impact on our quality of life, which were dismissed by FDA statisticians. It’s evident that Ampligen has provided benefit to patients, with the testimony and data pointing to meaningful change in our ability to function and care for ourselves.

The true nature of this disease and the plight of patients have been ignored for too long. Patient testimony and patient and clinician experience provide evidence that this drug works in many patients. A number of AAC members agreed that Ampligen helps and other members noted that they saw an indication of effectiveness in some patients.
Let patients and their doctors decide whether the only treatment in FDA clinical trials for ME/CFS is the right medicine to provide relief from the living death that is our reality today. Remember that the disease itself has a collateral impact that creates its own serious risks for patients.

The advisory committee voted that Ampligen’s safety profile is adequate for approval.
Approve Ampligen by Feb 2, 2013. Anything less is condemning ME/CFS patients to years more of continued suffering without any hope of relief.

Just Do it!

Hello everyone! Happy Thursday. Please tune into the FDA...

Thu, 20 Dec 2012 13:26:00 -0500

Hello everyone! Happy Thursday. Please tune into the FDA advisory meeting starting now. They will be talking about Ampligen. This is personal for myself and Lizzie. We need more treatment options. We support more treatment options. FYI…Lizzie has been showing some improvement with IVIG infusion therapy but nothing spectacular! She’s been receiving IVIG monthly since her 18th birthday , August 29, 2012.
Please check out the meeting. Show support. Live now!

https://collaboration.fda.gov/aac122012/?launcher=false

Connect Pro Meeting Login

collaboration.fda.gov

Learn how to beat holiday...

Wed, 19 Dec 2012 01:12:44 -0500

Learn how to beat holiday stress!

http://www.health.harvard.edu/blog/mini-relaxations-to-ease-holiday-stress-201211235568

neptunesummer: Here’s me blathering like an idiot about illness...

Sat, 08 Dec 2012 01:25:08 -0500

neptunesummer:

Here’s me blathering like an idiot about illness related things.

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Sat, 08 Dec 2012 01:23:42 -0500

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akacarlton:

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Uhm, I really need this.

Give the gift of health. It’s priceless and shows you...

Sat, 08 Dec 2012 00:30:52 -0500

Give the gift of health. It’s priceless and shows you care. I adore Pro-Health products because I always know I’m getting a quality supplement geared especially for me as an ME/CFS patient. Check it out when you get a chance:

ProHealth.com Holiday Gift Ideas

To read more on this article go to: Back to School and Chronic...

Fri, 07 Dec 2012 17:35:00 -0500

To read more on this article go to:

Back to School and Chronic Fatigue Syndrome

http://www.medscape.com/viewarticle/775222?src=nl_topic%3Fsrc%3Dstfb

With the new school year under way, it is important for school nurses, other clinicians who treat children, and educators to be aware of a poorly recognized debilitating illness that can affect adolescents and children and have an impact on their academic and social functioning. This illness is chronic fatigue syndrome (CFS), a complex illness that severely affects functioning and quality of life. CFS is often thought of as a problem in adults, but it also affects adolescents and, less frequently, children. CFS remains poorly understood by healthcare professionals, and the symptoms in children and adolescents may be misinterpreted as depression or school avoidance.

In adolescents, CFS is more likely to develop after an acute, flu-like illness or injury, but gradual onset of illness may occur. Symptoms of CFS in adolescents are similar to those in adults: debilitating mental and physical fatigue resulting in a significant reduction in activity, sleep problems (such as unrefreshing sleep and a need to sleep more during the day), marked worsening of symptoms after physical or mental exertion, muscle and/or joint pain without redness or swelling, headaches, and impaired memory or concentration. Postural orthostatic tachycardia syndrome (POTS) or orthostatic instability is frequently experienced by children and adolescents with CFS. Sore throat and tender cervical or axillary lymph nodes are also common symptoms in pediatric CFS.

Diagnosing CFS requires ruling out other treatable conditions that could be causing the symptoms. In adolescents, diagnosis is also compounded by the process of puberty, a time of hormonal fluctuation and social transition from childhood to adulthood that can contribute to problems with sleep and social adjustment. Children may have difficulty describing their symptoms.

It is most important to diagnose CFS in adolescents and children to prevent or mitigate the effects of missed school and missed opportunities for socialization. When school nurses recognize and understand the impact of CFS, they can serve as effective advocates to mobilize resources to support the child or adolescent to maximize the student’s academic and social development. School absence as a result of illness is best addressed with the school, parents, and physicians as partners. Adolescence is a critical time in human development that influences the individual’s adult life, and friends and socialization are particularly important during this life period. Fortunately, recovery from CFS is more common in adolescents than in adults; however, this does not occur in everyone, and long-term follow-up and adjustments are often needed.

Web Resources

Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS) Association of America: Research 1st. Pediatric CFS: Gains and Gaps.

Chronic Fatigue and Immune Dysfunction Syndrome Association of America: CFS Fact Sheet - Pediatric CFS

CFIDS Chronicle. Pediatric CFS.

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neptunesummer: This.

Sat, 01 Dec 2012 00:35:08 -0500

neptunesummer:

This.

ashketchumz: Me

Sat, 01 Dec 2012 00:35:01 -0500

ashketchumz:

Me

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