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ME/CFS Video Testimony

My friend Stacy came across a very interesting video regarding ME/CFS that I wanted to share here.

Dr. Kenneth Friedman’s testimony to the CFS Advisory Commitee:

Please pay particular attention to the comments made by Pat Fero on the following site: ME-CFS Community.com. Her comments are in response to the very same YouTube video posted above. She discusses (in detail) the goings-on at medical school regarding ME/CFS.

This is an eye-opening look into what’s NOT being done on behalf of ME/CFS patients. It’s also brave of Dr. Friedman to put his job in jeopardy by making this testimony.

This post was written by Jeanne at http://chronichealing.com. Copyright © Jeanne — chronichealing.com. All rights reserved.


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Reading: ME/CFS Video Testimony

10 comments

1 Teresa @ Too Many HeartbeatsNo Gravatar { 11.13.09 at 1:18 pm }

Hey Jeanne,

I wanted to say hi and let you know I have blogged about my recent ordeal with Sepsis. I’d really appreciate it if you’d help me let others with Dysautonomia know about it. I’ve Tweeted about my post and would appreciate any RTs. Thanks so much for all you do!

Blessings,

Teresa <
.-= Teresa @ Too Many Heartbeats´s last blog ..ENDURING SEPSIS with Dysautonomia Part 2 of 2 =-.

2 AvivaNo Gravatar { 11.13.09 at 6:41 pm }

Sad. So sad that the medical establishment isn’t doing more to learn about and teach about CFS. I wonder if this will change now that they’ve made a link between CFS and that retrovirus? Time will tell, I guess. But still so sad.
.-= Aviva´s last blog ..OT: A Fun Way To Earn Prizes While Searching The Web =-.

3 JeanneNo Gravatar { 11.14.09 at 8:03 pm }

Hi Teresa,

I just read both of your Enduring Sepsis posts and will be happy to help you get the word out. First I need some clarification. Can you educate me about what connection, if any, there is between your recurrent episodes of sepsis and your chronic condition of dysautonomia? I know of many people with dysautonomia but you are the only person I know who has these recurrent episodes of sepsis. Have your doctors told you there is a connection between them? If so, what? I am so sorry you’ve been through so very much!! It must be very frightening! I will comment in more detail on your blog as soon as I get a chance. I have been getting backlogged on my comments moderation quite a bit lately. There has been a great deal going on. So, I’m trying to catch up on my side right now. As far as re-tweeting your messages, I’m afraid I can’t help you there because I no longer have a Twitter account. It is a long story and I’ve already blogged about portions of the story several times (with more info to come). My decision to close my Twitter account was preceded by an incident with 27 days of having an impostor pose as me on Twitter using a “clone” account with my face, name (one letter off from my Twitter name), and even my blog link listed as the URL in the impostor account. This identity theft incident was not the only reason I decided to close my Twitter account but was certainly a factor. After 27 days of hounding Twitter aggressively, I got them to close down the impostor account. I then cleaned out and closed my own Twitter account (which took me about a week). In any event, I am confused about what connection, if any, there is between your chronic condition of dysautonomia and your recurrent emergency situations with sepsis. Please let me know. I hope you are feeling much better very soon!!!

Jeanne

4 JeanneNo Gravatar { 11.15.09 at 1:59 am }

Aviva,

It really is sad. One can only hope it will improve! Can you please send me any links on the retrovirus business? The last few weeks have been so out of control that I haven’t been able to stay on top of everything. I noticed a flurry of messages about the retrovirus business but I am not familiar with all the details because I was too distracted with other issues.

Jeanne

5 YayaNo Gravatar { 11.15.09 at 10:29 pm }

So behind on blogging! Sorry!
.-= Yaya´s last blog ..We’re Having A Baby!!!! NEXT WEEK!!!!! =-.

6 JeanneNo Gravatar { 11.16.09 at 1:59 am }

Alicia,

Dear heaven, girl, I think you have a VERY good reason for being behind and don’t think you owe anyone any explanations or apologies!

If you don’t know what I’m saying to Alicia, see this:

Big HAPPY News!

Jeanne
xoxoxo

7 JNo Gravatar { 11.20.09 at 1:30 am }

Jeanne…
I knew some of this, due to having family and friends with CFS, but hadn’t heard all of this. It’s DISGUSTING!! 🙁 🙁 🙁 I’m so saddened and sickened by this. Thanks so much for passing this on!!
J
.-= J´s last blog ..How much longer can I survive? =-.

8 JeanneNo Gravatar { 11.20.09 at 2:49 am }

J,

It’s outrageous. It really is.

Jeanne

9 Teresa @ Too Many HeartbeatsNo Gravatar { 11.21.09 at 3:34 pm }

Jeanne,

I’ve been meaning to come back and answer your question about the connection between Dysautonomia and Sepsis but I have just not been feeling well at all. This last infection really took a lot out of me and now I’m having more problems. As soon as I am feeling a little better, I will come back and give you my answer to this question. However, I did want you to know I had not forgotten.

Thanks so much for your support. I hope you have a fantastic weekend!

Teresa <

Communicating With Your Spouse About Your Chronic Pain…
http://toomanyheartbeats.blogspot.com/2009/11/in-sickness-and-in-health.html

10 JeanneNo Gravatar { 11.22.09 at 3:07 am }

Teresa,

I totally understand and don’t want you pushing yourself when you’re recovering from a hospital stay. I’m sorry you’re having more problems. 🙁 I understand. No worries.

Thank you so much for your support. I hope you are having a fantastic weekend yourself!

Jeanne

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