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From Our Readers – Comments & Suggestions 02-02-11

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Social Meeting Site for Patients Under 40

I am a long-time member of ProHealth, and I was hoping you would help spread the word about a new group I started specifically for young-adult patients. Here’s my announcement.

Long-time ProHealth member mojoey (Joey Mitchell) has created Healkick, a group that aims to provide a medical, social, and professional network for 40-and-under young adult patients with neuro immune disease (ME/CFS, fibromyalgia, chronic Lyme, Atypical MS, MCS, and mold illness).

In order to join, please go to http://groups.google.com/group/healkick (you'll need to sign up for a Google account if you don't already have one).

Here’s why I started this group:

During the 5 years I've been sick, I've always wanted to meet other patients around my age (I am a 27-year old male ME/CFS patient). Despite living in large metro areas such as San Francisco, Los Angeles, Columbus, and Las Vegas, I never succeeded in finding one in any forum, whether online or local support groups, but instead always stumbled upon one by chance. Young adult patients already deal with an inhuman amount of suffering and isolation due to neuro immune diseases such as ME/CFS, so it really is hard to fathom that no one has created a dedicated destination for us to find other patients in our age group who can relate to the consequences of this illness that are unique to our generation.

This lack of support for young adults, often fresh out of the most socially-embedded times of their lives, is what I'm trying to change with Healkick, and from the early discussions going on in our forum, it seems this type of interaction between younger patients has been a long time coming. You can also support Healkick by "liking" our promotional facebook page at http://www.facebook.com/pages/Young-Adult-Patients-with-ME-CFS-Chronic-Lyme-Fibromyalgia-etc/183809648306533?v=app_4949752878

Joey Mitchell


Gabapentin (Neurontin) May Cause Hives

Re: “Neurontin May Cause Hives (Itchy Welts) and May Also Cause the Following Other Symptoms That are Related to Hives”

I was on Neurontin for about 10 years. I thought this was the best drug for me. For ten years I took it 4 times a day. And for the last 4 years every one of the symptoms listed above I was treated for. Finally I realized the hives I have suffered from for the last 6 months were caused by Neurontin. So now I'm off of everything and the hives are now gone.

Neurontin hides in your fat cells, so it took a while to get out of my symptoms. Now I wonder what all the other drugs I've been on for all the other symptoms listed above have done to my body. – R

Note: According to Wikipedia, Gabapentin is a "GABA analog" drug developed to treat epilepsy, and widely used to relieve post-shingles pain and other types of neuropathic pain. It is being tried off label for a wide range of conditions from RLS to depression with varying outcomes, and until recently researchers had not been able to determine how it works.


Detailed ME Ability/Symptom Severity Scales

If you want to measure where you stand or how your physical, cognitive, and overall symptom severity may be changing, there's a three-part scale on Jodi Bassett's www.HFME.org website [www.hfme.org/themeabilityscale.htm]. It offers much more detail than other scales I've seen. – U


Jody Smith's Don't Do List for ME/CFS

Re: "10 Things Not to Do If You Have CFS"

Jody Smith says she has had ME/CFS for 18 years. She wrote this funny article for EmpowHER.com. The list includes “Don’t do a monthly newsletter for anyone for any reason” and nine other mistakes that I for one will now plan to pass up. – P


Sharing Our "Bloopers"

Re: The ProHealth Chit Chat message board topic "CFS/FMS'ers Say the Darnedest things!"

My Mom, who I suspect may have FMS, said some when we were kids, but one stands out in my memory. We three kids were playing outside, and came tromping inside just as Mom was finishing mopping the floor. She said, "Don't get your footy mudprints all over the floor!" We all had a good laugh over that! – D


Have You Been Affected by Toxic Fumes During Air Travel?

Author Allan Seabridge is writing a new book provisionally titled A Thoroughly Modern Complaint – the Story of Aerotoxic Syndrome and is looking for information from those affected by the issue.

In order to help understand how Aerotoxic Syndrome has affected aircrew and passengers and how the industry is dealing with the problem, Allan has prepared a questionnaire. If you feel you may be able to contribute, we would be most grateful if you could fill in the questionnaire and return it with any relevant supporting information.

Aerotoxic Association


Tell the CDC to Change Direction of Their ME/CFS Research

On December 6, P.A.N.D.O.R.A. and 10 other ME/CFS patient organizations sent a letter to the new chief of the CDC’s Viral Diseases Branch – Dr. Elizabeth Unger – urging implementation of 9 changes in the way the CDC conducts ME/CFS research.

Now, PANDORA Founder Marly Silverman invites you to go to the PANDORA page of www.change.org to view the nine changes and add your name to a petition requesting that they be implemented.


State of the Knowledge Workshop to Include Leading Patient Reps

Two patient advocates have been selected to the NIH Steering Committee's State of the Knowledge Workshop on ME/CFS, to be held April 7-8, 2011.

The patient representatives will be Pat Fero and Mary Schweitzer (both supported by RMCFA). Also included on the panel, Drs. and advocates Nancy Klimas, Lenny Jason, and Ken Friedman, so patients’ concerns will be well represented.

We would like to thank Dr. Mangan, Senior Research Advisor – Office of Research on Women's Health, NIH for recognizing the importance of this effort and including patients’ representatives.

Rocky Mountain CFS/ME & FM Association (www.rmcfa.org)
January 26, 2011


Project Invites Participation of Returning Iraq/Afghanistan Vets & Families

Dr. William Collinge, author of Recovering from Chronic Fatigue Syndrome, A Guide to Self-Empowerment, has issued the following call for participation in "Mission Reconnect" – a unique opportunity for OIF/OEF Veterans and those who care about them:

"Call for participants in a NIH-sponsored research study: Veterans of Operations Enduring Freedom (Afghanistan) and Iraqi Freedom returning from deployment and their friends/families may be eligible to participate together in a special project in Greater Boston and in Burlington, Vermont. The purpose is to evaluate a program to learn and practice methods that may help vets and their partners work together to handle stresses in their lives."

For more information about the project and to apply, go to www.collinge.org/MissionReconnect.html


Startling Data on Fibro Patients' Medical/Medication Costs

Re: "Longitudinal evaluation of health care utilization and costs during the first three years after a new diagnosis of fibromyalgia"

In the first 12 months after a person is diagnosed with FM, their medical costs including meds are more than $7,000 on average. – W


NJCFSA Accepting CFS Student Applications for Scholarship Now

The New Jersey Chronic Fatigue Syndrome Association's 2011 Scholarship is accepting applications for its $1,000 award to graduating seniors and students pursuing college or technical school diagnosed with CFS. Deadline for submission is April 15. For applications or more information, call 888-835-3677 or go to http://www.njcfsa.org/2010/12/31/scholarships/.

NJCFSA (www.njcfsa.org)


Lab Reports Detecting XMRV 'At Nontrivial Rate'

Re: "Lab reports finding XMRV/MLV variants at 'nontrivial rate' – discovering more."

Dear patients, please don't jump into this too quickly; many labs have not been able to find XMRV, and it is not unusual for labs to want to do testing for new pathogens. Follow the money. This lab is not using the WPI protocols, and there is a very real chance for false positives and false negatives. Buyer beware. – S


Green Tea, Alzheimer's and Cancer

Re: "Significant New Proof of Green Tea's Protective Potency vs Alzheimer's & Cancer Uncovered"

Thanks for this information. I look forward to hearing more about the Okello team's research on this subject. – R


Note: This information has not been evaluated by the FDA. It is generic and anecdotal and is not meant to prevent, diagnose, treat or cure any illness, condition or disease. It is very important that you make no change in your healthcare plan or health support regimen without researching and discussing it in collaboration with your professional healthcare team.

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