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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Next CFSAC meeting date has been announced for November 8, 2011

ixchelkali

Senior Member
Messages
1,107
Location
Long Beach, CA
I didn't get the Hemispherx representative. I thought this was a time slot for PATIENTS.
I iked the ones who enacted a CFS patient being taken away to a psych ward. I thought it was effective.

No, it's a time slot for public comment, any member of the public. As I understand it, this committee is unusual in having so many comments from patients.
 

Nielk

Senior Member
Messages
6,970
No, it's a time slot for public comment, any member of the public. As I understand it, this committee is unusual in having so many comments from patients.

I just double checked the agenda and you are right, it does say public comment. For some reason I thought it was for patients.:)
 

Andrew

Senior Member
Messages
2,513
Location
Los Angeles, USA
My CFSAC testimony

Thank you to the CFSAC for allowing me to speak. My name is Andrew ____.

Before I became ill with chronic fatigue syndrome, I didn't take it seriously. But now I can tell you just how serious it is. In late 2005 I was hit with chronic fatigue syndrome. In January 2008 I was diagnosed with prostate cancer. Three months later I was diagnosed with a squamous cell carcinoma in my tongue. And now I also suffer collateral damage from cancer treatment. And after all of this, I can honestly say that having chronic fatigue syndrome has been much worse than dealing with two cancers. Because it is not cancer that keeps me from working and visiting friends. It is not cancer that makes me so sick I need help with basic personal care. It is actually chronic fatigue syndrome that has destroyed my life, as I used to know it.

Some people dismiss CFS because many of us don't look sick. But I also didn't look sick when I was diagnosed with cancer. And nobody used this to dismiss cancer. Other people dismiss CFS because some of us can articulate with the same strength and focus as healthy people. But I also articulated okay with a cancer tumor in my tongue, and I still can despite stiff scar tissue from radiation treatment. And nobody uses this to dismiss cancer. With most illnesses, people are seen as heroic for all they accomplish despite being sick. But with CFS, our accomplishments are used to dismiss us. They are used to discredit us.

So what is causing this dismissive attitude? I think one problem is the fatigue-centric model. The illness name is misleading. The description is misleading. Most doctors who know the full description still think in terms of fatigue. They look only for energizing solutions. They ignore inflammation, immunity, and neurocognitive issues. In my opinion, part of this problem could be solved if the name and description were changed according to the International Consensus Criteria.

But I also think the available information about CFS is a problem. Imagine, if you would, that someone did a study on subjects who have chronic coughing. And gave them sugar lozenges. And found moderate improvement in some subjects. And than I took this study and claimed sugar lozenges treat asthma, while ignoring that the subjects were not evaluated for asthma, only for chronic coughing.

Sounds crazy doesn't it. Yet, this is the type of thing that is being done with CFS. For example, on the Centers for Disease Control website there is treatment information that cites Oxford criteria studies. These criteria define a different syndrome that only requires physical and mental fatigue. No sore throat, no tender lymph nodes, no post exertion malaise. So it is not chronic fatigue syndrome as defined in the United States. It only has the same name. And using different syndromes as if they are interchangeable is bad science, no matter what you name them. Yet, the CDC and others have been doing this for years.

Do you think the Department of Health and Human Services would be complacent if their divisions used generic coughing studies to evaluate treatments for asthma, pertussis, or lung cancer? Would you like this approach used with the medical care of your family? In my opinion, the DHHS should stop condoning this, and instead, they should explain to people how this corrupts the understanding of CFS.

Further, the clinical section of the CDC website is missing important information about medications. Now, I realize that pharmaceutical research is very limited. But it is more reliable than treatment models based on the wrong syndrome. So why not include the better medications, but also explain the limitations.

There is new leadership in key positions at the DHHS and CDC. So finally, the possibility exists for ending the practice of misrepresentation and selective omission of CFS information. I've seen some positive change already. I hope this is a sign of more to come, and not just a brief flurry of activity.

Thank you for letting me speak.
 

Nielk

Senior Member
Messages
6,970
Andrew,

I heard you! I thought you were testifying tomorrow. You did such a great job!!!! Very moving and pointed!!!
You get an A+ from me. I didn't know about your cancer experiences. I'm sorry to hear about it. Are you over with those problems?
 

ixchelkali

Senior Member
Messages
1,107
Location
Long Beach, CA
Andrew, your testimony was great! I didn't know it was you. I was applauding at the end, all alone in the house.

Good luck, Nielk. I'm sure you'll be fine.
 

Nielk

Senior Member
Messages
6,970
My CFSAC testimony:



Hi, my name is Gabby ----, I am a 56 year old wife, mother and grandmother. I have been suffering from the most severe, misunderstood and ill-treated illness called ME/CFS for the past nine years.

I used to be an active member of society. I worked full time, raised my children, took care of the household and did charity work.

All this came to a halt in 2002 when I came down with a vicious virus that lasted for weeks. My health declined to the point that I was forced to quit my job.

My GP was clueless as to what to do for me. His medical training did not prepare him for this. All the other doctors I was referred to were disbelieving. The routine tests that they were taking were coming back negative. They thought I was exaggerating my complaints. Of course they couldnt see my pain and suffering. This is an invisible disease.

At last, I was lucky to find a specialist, who finally diagnosed me with CFS. Unfortunately, by then, I was so ill with a heavy viral and inflammation load, that it was impossible to reverse the damage. Had my GP recognized the problem right away, treatments might have helped me.

At present, nine years after my diagnosis, I have become mostly house bound. I feel like I have the flu all the time and like I just hiked up a mountain for two days, without sleep. I suffer from insomnia and constant severe headaches. I cant stand or walk for more than a few minutes.

Most disturbingly, I suffer from cognitive problems which affect my memory, renders me unable to think clearly or speak comprehensibly.

When I do try to do some minor activity, all my symptoms become aggravated. Then I have to lie still in bed in a dark room without any noise for a few days or weeks at a time.

Could you imagine having 7 grandchildren and you cant play with them because of your sensory overload? The noise causes sharp headaches. This is my most painful reality.

This is a dreaded disease. Dr. Mark Loveless. An AIDS researcher commented A CFS patient feels every day significantly the same as an AIDS patient feels two months before death

The name Chronic Fatigue Syndrome coined by the CDC, is an insult and denigrating. People tell me I am fatigued all the time too, you should get out more and exercise or You look fine to me. I am alone in my suffering. It is critical that this cruel name be changed if we want any advancement and improvement for this illness.

Because of the way CFS is currently coded, it is almost impossible to collect disability. The International World Health Organization has been coding it since 1969, as a neurological disease. The new ICC agrees. When will the US catch up to the rest of the world?

I belong to a CFS forum where someone posed the question asking people when did they believe that there will be a treatment for us. I was very sad to read that the majority answered not in my lifetime.

Our only hope right now comes from the few doctors and scientists in the country who specialize and treat patients with CFS. Some private grants have been given to run sporadic studies. For example I am excited about the new ME/CFS center at Mt. Sinai in NYC that my specialist Dr. Enlander is part of. He received a matching grant of 1 million dollars from one of his patients. Many top specialists are joining this research effort. Dr. Eric Schadt and Dr. Ila Singh will research genomics in the diagnosis of ME/CFS. Dr. Enlander will research new treatment modalities. Dr. David Bell has expressed an interest in joining Dr. Enlander in this project. They will be running studies and treating patients. Could you imagine what they could accomplish if they would get government funding?

This illness drains the US economy in the amount of $27 billion annually, yet the NIH budgeted a mere $6 million dollars for research for this year. This makes no fiscal sense at all, yet this is whats happening.

The cost to the patient of running after possible treatments is immense. Insurance policies will cover very little if any of it. Some patients become penniless and homeless with no help from the government and its health agencies.

I was taught: play fair, dont hit people, say sorry when you hurt somebody.

I think its time for the US Health Agencies to admit how they have neglected this population of very ill people and to bring proper awareness, proper funding, and proper care.

Thank you for the opportunity to speak.
 

OneWaySurvival

Senior Member
Messages
115
Location
USA
Glad to see this thread about the CFSAC today. I have been on chat, where not much is happening! I'm going to post my chat comments here in case someone is reading this thread and wants to hear some notes from the 2pm public comment that just finished.

First off, thank you Andrew and Gabby for your testimonies! Everyone is doing great. And I appreciate your efforts so much.

From General Chat:
hi fellow sufferers and survivers
ix...did you hear anything interesting during public comment this morning? I just called in for first time and it was lunch break. bad timing.

next public comment starts in 30 minutes. Will they talk about Bob Miller's protest? Rituximab? Funding? Will the govt. care enough to throw us a bone and allocate some serious money?

Purple
hello OneWay, is there a link where I can follow this online?

OneWaySurvival
only audio this time (by phone). Major disappointment that they dropped the video this time.
Go to CFSAC page to find call-in #
(866) 395-4129 is call in number
24756185 is password for today
All this is on the HHS govt page for the CFSAC meeting. It also shows the agenda.

They are on lunch break for next 20 minutes, next up public comment for 45 minutes. Then some discussions on future direction of research by a presenter, then committee discussion of past recommendations.
Public comments are always interesting to me. Other parts not so much because it's all talk, no action.

OneWaySurvival
2:34 PM
Robert Miller is about to speak.
Touting ampligen (helps him not be bedbound).
Lamenting that videocast was cancelled. (hear hear)
Lots of changes to CFSAC. Wanda Jones gone, Dennis Mangan gone.
Thanking BWG and Norwegian doctors for recent work.
Scolding NIH for poor funding, neglect, and pathetic recommendations to "conserve energy" and use CBT and GET.

OneWaySurvival
2:39 PM
Playing clip of his wife Courtney asking Pres. Obama for help in ME/CFS. And Obama's "promise" to look into the problem and have NIH explain what they are doing and promised to encourage them to do more.
End of testimony. Applause.

Before Bob Miller, there was an interesting testimony by Dr. Friedman. (Friedberg? sorry brain fade!)
Dr. F alerted us to a very alarming situation at a university hospital in New Jersey.
They have a current policy that bans ALL activity to look into ME/CFS for their personnel during work hours or with university computers and resources.
This org is called UMDNJ, and is currently being evaluated to see if it should be disbanded or kept going.
Dr. F asked for ME/CFS people to submit comment so this harmful university policy can be overturned, because it controls 3 universities and basically all health care orgs. in NJ!

2:47 PM
While I was typing, Jennifer Spotila (CAA?) came on but I missed most of what she said.
She basically lambasted the CFSAC and demanded help for the ME/CFS community.
Go Jennifer...that was exciting!

OneWaySurvival
2:50 PM
Hmmm, one comment about Bob Miller. He said nothing about a protest! I was surprised. From Cort's front page article, I thought this was going to happen today. Anybody know what's going on with the protest?
 

OneWaySurvival

Senior Member
Messages
115
Location
USA
Gailen Marshall, 3pm presenter. Gailen is a CFSAC member.

Gailen brought up Rituximab results as a great example of a study that will provide direction for future research. He finds it (Rituximab) very promising for "some or all ME/CFS patients."

He asked for comment from other CFSAC members. Lenny Jason is talking.

Discussion is drifting away from Rituximab into more general stuff. And now back to Rituximab. Gailen saying it's very expensive and it is not without big risk or side effects. B cells are important. But, could they be reservoirs for latent viruses? Not necessarily autoimmune conclusion. Norwegian study very well done.

It's a reverse approach to translational medicine. Gailen is advocating for more of this reverse approach. Start with drug results, move backward into research.
 

Rrrr

Senior Member
Messages
1,591
invasion of privacy

to get to hear the audio, you have to give them your first and last name and email address. that is an invasion of privacy.

i guess one can give a fake name and email.
 

Sing

Senior Member
Messages
1,782
Location
New England
Really good job, Andrew, and Nielk--really good, conveying both your own experiences so well and also where you see the response is at, and needs to be. Sorry can't think. Am listening to the break blurb. Just called in 45 mins ago. I recognized familiar voices! Good to hear them thinking outloud. This reminds me of all the circling before a war party, a hunting trip. Well, at some point they are going to shoot off in the right direction!
 

Sing

Senior Member
Messages
1,782
Location
New England
Wish I could be with you in person, Andrew and Gabby, I would give you big hugs!

What a party they are having!
 

mezombie

Senior Member
Messages
324
Location
East Coast city, USA
Anyone who wants to make the following comment to the Federal officials in charge of ME/CFS policy (including several members of the CFSAC plus others who will give presentations) can do so by signing the following petition.
http://www.change.org/petitions/apologize-for-not-responding-appropriately-to-the-mecfs-epidemic Signing will generate emails to eight different officials. Your emails will consist of the following text:

Greetings,

I just signed the following petition addressed to Secretary of Health & Human Services, Kathleen Sebelius.

----------------
Apologize for not responding appropriately to the ME/CFS epidemic.

Bjrn Guldvog, Deputy Director General of the Norwegian Directorate of Health, recently made the following statement in response to a published study indicating the cancer drug Rituximab may be an effective treatment for ME/CFS:

"I think that we have not cared for people with ME to a great enough extent. I think it is correct to say that we have not established proper health care services for these people, and I regret that."

Follow the Norwegian Health Minister's example.

In addition, we ask that you:

1. Double the current NIH funding for extramural research. Priority should be given to research on biomarkers and potential pathogens as well as clinical trials.

2. Take down information on the CDC's CFS website stating testing for pathogens and biomarkers is "experimental and theoretical" and that GET and CBT are appropriate treatments.

----------------

Sincerely,

[Your name]

This is such as an easy way to get your voice heard. Just click on the link below and follow the directions for signing.

http://www.change.org/petitions/apologize-for-not-responding-appropriately-to-the-mecfs-epidemic
 

Nielk

Senior Member
Messages
6,970
Thank you everyone for your kind comments.
I did have all of you in mind when I was speaking.
I never did this type of thing but the collective people here on PR empowered me to do something and I'm glad I did:)
 

Dolphin

Senior Member
Messages
17,567
2:47 PM
While I was typing, Jennifer Spotila (CAA?) came on but I missed most of what she said.
She basically lambasted the CFSAC and demanded help for the ME/CFS community.
Go Jennifer...that was exciting!
For anyone interested, testimony is at: http://www.research1st.com/2011/11/08/cfsac-spotila/ . Comments there may get a reply.

Thanks for the notes - useful.

Sorry, no time atm to read testimonies so can't comment/praise except to say well done for doing it. Best of luck all.
 

Andrew

Senior Member
Messages
2,513
Location
Los Angeles, USA
gabby - Great presentation. I'm glad you did this.
@Everyone - Thanks for all the positive comments. Very much appreciated.

And good luck to everyone presenting tomorrow. I wish I could have listened today. Unfortunately, it didn't work out that way. And I don't know about tomorrow. I hope they get the movies up soon so I can watch.