16
Jan
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 TeamContact: 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 HEREThe 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!

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

Why not support help us have more treatment options? 

  • Online Email Campaign- per ME Advocate Robert Miller
  • image
    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!
8
Dec
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

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

7
Dec
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.

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.

4
Oct

Today October 4th, The Chronic Fatigue Syndrome Advisory Committee wraps up at 5pm est. Feel free to catch some of the meeting.

http://www.hhs.gov/live/ 

For today’s agenda, scroll down to October 4th. http://www.hhs.gov/advcomcfs/meetings/agendas/cfsac20121003_agenda.html

18
Sep

How much pesticides are in the food you eat? 

The Environmental Working Group analyzed 10 years worth of data from the USDA & US Department of Agriculture to make up their 2012 Shopper’s Guide to Pesticides in Produce. The website even has AP’s for IPhones and Android Devices : http://www.ewg.org/foodnews/guide

Dirty Dozen Plus

Buy these organic. The lower the number the MORE pesticide was found!

1
Apple
Apples
2
Celery
Celery
3
Red Pepper
Sweet bell peppers
4
Peaches
Peaches
5
Strawberries
Strawberries
6
Nectarines
Nectarines
– imported
7
Grapes
Grapes
8
Spinach
Spinach
9
Lettuce
Lettuce
10
Cucumber
Cucumbers
11
Blueberries
Blueberries 
– domestic
12
Potatoe
Potatoes
Plus
+
Green Beans
Green beans
+
Kale
Kale/Greens

+ May contain pesticide residues of special concern

Clean 15
Lowest in Pesticide
1
Onions
Onions
2
Sweet Corn
Sweet Corn
3
Pineapple
Pineapples
4
Avocado
Avocado
5
Cabbage
Cabbage
6
Peas
Sweet peas
7
Asparagus
Asparagus
8
Mango
Mangoes
9
Eggplant
Eggplant
10
Kiwi
Kiwi
11
Cantelope
Cantaloupe 
- domestic
12
Sweet Potatoes
Sweet potatoes
13
Grapefruit
Grapefruit
14
Watermelon
Watermelon
15
Mushrooms
Mushrooms
10
Sep

30 THINGS ABOUT MY INVISIBLE ILLNESS YOU MAY NOT KNOW 

1. The illness I live with is: Myalgic Encephalomyelitis a.k.a Chronic Fatigue Syndrome, Postural Orthostatic Tachycardia Syndrome, and EDS Type 3

2. I was diagnosed with it in the year: I was diagnosed with ME/CFS in April or May of 2011 and POTS in November of 2011 and EDS in June of 2012

3. But I had symptoms since: August 2010

4. The biggest adjustment I’ve had to make is: I feel like school has been the biggest adjustment for me… it really put me off track. I was in a lot of advanced courses when I got sick when I was in 11th grade… I was in English Honors, Advanced Trig, French 3, etc…

5. Most people assume: that I don’t try hard enough. That I’m just making excuses…

6. The hardest part about mornings are: waking up. Forcing myself to shove tons of pills down my throat. 

7. My favorite medical TV show is: I don’t watch a lot of TV but I do like Grey’s Anatomy (I know it’s more of a drama but yeah.)

8. A gadget I couldn’t live without is: my iPhone. 

9. The hardest part about nights are: getting to sleep. 

10. Each day I take __ pills & vitamins. I don’t know probably 15+

11. Regarding alternative treatments I: have tried a lot of different things. I’ve tried chiropractors… I’ve tried weird laser therapies, I’ve tried infra-red blah blah blah. Right now the only “alternative” thing I’m doing is supplements but that’s becoming more mainstream as time goes on. Plus I think they do help.

12. If I had to choose between an invisible illness or visible I would choose: Invisible. I decide who knows and even though it sucks to “look fine”, I like that I can go on about my business without people pestering me. 

13. Regarding working and career: I have a part time job right now with ProHealth. They are an awesome company and I get to help other people with CFS or Fibro and it’s really an incredible opportunity. I’m so thankful to have this job. I get to set my hours and everything. I work really hard though.

14. People would be surprised to know: that I was an allstar softball athlete before I got sick. 

15. The hardest thing to accept about my new reality has been: somewhat missing out on normal college life. I only take one class on campus… I don’t live on campus, I commute. I feel a little left out of the fun. 

16. Something I never thought I could do with my illness that I did was: At one point, I built up my endurance and strength to the point where I tried out for my high school’s softball team again and I did it… and I was the starting pitcher for them. Until I started crashing. I’m still really proud of that though. Plus it gives me the opportunity to tell any jerk of a doctor that I tried conditioning and exercising to get better and it worked for a short amount of time before I relapsed and became so freaking sick I could barely move. So exercise didn’t cure me. 

17. The commercials about my illness: Non-existent.

18. Something I really miss doing since I was diagnosed is: taking long walks outside… spending the whole entire day out with my friends and having the best time without getting tired or overheated.

19. It was really hard to have to give up: softball… ): I know I keep repeating it and I talk about it pretty much all the time when I reminisce about my past but it meant so much to me. It was my way of getting away from everything and I knew I was good. I had so much confidence when I was on the field. I felt invincible when I played. 

20. A new hobby I have taken up since my diagnosis is: blogging, I play guitar more often, experimenting with make-up, etc. 

21. If I could have one day of feeling normal again I would: that is such a good question. Maybe pitch one more game of softball… just one more game. 

22. My illness has taught me: Not to take things for granted. Also not to let this illness get in the way of my dreams. 

23. Want to know a secret? One thing people say that gets under my skin is: “you know, if you improved your diet you’d start to feel a lot better.” 

24. But I love it when people: tell me that it’s going to be okay. That I’m a strong person. 

25. My favorite motto, scripture, quote that gets me through tough times is: "You never know how strong you are until being strong is the only choice you have."

26. When someone is diagnosed I’d like to tell them: It’s not going to be an easy journey, but I am here for you. There’s a huge community of people that are here for you that will support you through your hardships and your successes. 

27. Something that has surprised me about living with an illness is: I’ve really gotten to know myself as a person better. 

28. The nicest thing someone did for me when I wasn’t feeling well was: send me a message telling me that they know how I feel. 

29. I’m involved with Invisible Illness Week because: I love being involved in anything regarding CFS/ME. I really do hope that one day we will find a cure for this horrible disease so all the people ridiculed by their doctors, family and friends can finally feel validated!

30. The fact that you read this list makes me feel: flattered. (: