Briefing on the Institute of Medicine report in Washington, D.C. --webcast March 25

[Sushi]

From Solve MECFS Initiative

On March 25, the Solve ME/CFS Initiative will host a briefing on the Institute of Medicine report in Washington, D.C. The briefing, which will include media, congressional leaders and executive branch decision-makers, is intended to further the IOM report momentum and turn the report into action, particularly by urging additional federal research funding.

The briefing will feature three speakers:

- Dr. Ellen Wright Clayton, Chair of the IOM Committee on the Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Dysautonomia: Postural Orthostatic Tachycardia Syndrome (POTS)
- Morgan Fairchild, Actress, Activist and Patient
- Carol Head, Solve ME/CFS Initiative President/CEO

You are invited to join via webcast. Register for the briefing event here:
https://www.webcaster4.com/Webcast/Page/529/7674

 

[Sasha]

Some more blurb here:

http://solvecfs.org/morgan-fairchild-joins-smci-in-dc-for-iom-report-briefing/

 

[Sasha]

BTW, @Sushi, that bit about dysautonomia/POTS seems to be a bit of rogue text that has crept into Solve's FB version of this!

 

[Sushi]

BTW, @Sushi, that bit about dysautonomia/POTS seems to be a bit of rogue text that has crept into Solve's FB version of this!

Who knows how and why!

 

[Never Give Up]

Registered.

Morgan Fairchild is listed as a former patient on the website http://solvecfs.org/morgan-fairchil...m_content=[[firstname]]+Momentum+is+Building!

What do you know about this?

 

[Roseblossom]

Registered.
Please add your succinct comments about what you'd do if you were well: https://www.surveymonkey.com/s/IOM_IFIWereWell

I said "Every day I'd turn on my favorite music & dance, as I used to do before I got sick.

Then I'd work to get accurate information to every doctor NOW, and to get accurate information taught in every medical school, and to get accurate information put into every medical textbook."

I would no longer have to dread doctor visits, where no one knows any accurate facts about this illness, but instead push me to take antidepressants & exercise more.

 

[catly]

I hope this turns out better than the television news broadcast that Carol Head was part of. I did the survey anyway and signed up for the webcast.

 

[Kati]

Hillary Johnson has tweeted about Morgan Fairchild today.

@oslersweb: Morgan Fairchild is an actress who has suffered from M.E. for approximately two decades or more. She is not a flake. http://t.co/98FLAPULvz

Patients can hold a grudge against certain patient groups, however the times are changing. Having a celebrity associating to our cause and speaking for us can only be a good thing.

What is needed right now is speaking to our political representants and ask for money to be assigned for research. We need to leverage the IOM report in confirming that this illness is real and debilitating, and has been ignored for decades.

A recent tweet from Hillary Johnson calls for class action lawsuit.

 

[Nielk]

Hillary Johnson has tweeted about Morgan Fairchild today.



Patients can hold a grudge against certain patient groups, however the times are changing. Having a celebrity associating to our cause and speaking for us can only be a good thing.

What is needed right now is speaking to our political representants and ask for money to be assigned for research. We need to leverage the IOM report in confirming that this illness is real and debilitating, and has been ignored for decades.

A recent tweet from Hillary Johnson calls for class action lawsuit.

Where do you see the evidence that she has been suffering from ME? She bills herself as a former patient. It is not clear whether she had suffered from ME/CFS or Fibromyalgia. Solve ME/CFS Initiative bills her as an "activist" but the only activism that can be found by her is "AIDS activism".

 

[Nielk]

Where does it mention the address where this event will take place?

 

[Kati]

Where do you see the evidence that she has been suffering from ME? She bills herself as a former patient. It is not clear whether she had suffered from ME/CFS or Fibromyalgia. Solve ME/CFS Initiative bills her as an "activist" but the only activism that can be found by her is "AIDS activism".

Does the person speaking on our behalf even needs to have ME? Elizabeth Taylor didn't have HIV/AIDS!

Personally, I will take anybody who is willing to embrace the cause. Action is what is needed. This is an emergency.

 

[Nielk]

Does the person speaking on our behalf even needs to have ME? Elizabeth Taylor didn't have HIV/AIDS!

Personally, I will take anybody who is willing to embrace the cause. Action is what is needed. This is an emergency.

No, they don't need to be a patient but, I don't appreciate the doublespeak by the CAA.

 

[Ember]

Does the person speaking on our behalf even needs to have ME?

According to your quotation, "Morgan Fairchild is an actress who has suffered from M.E. for approximately two decades or more." Is this true?

 

[Kati]

No, they don't need to be a patient but, I don't appreciate the doublespeak by the CAA.

What do you mean 'doublespeak by the CAA'?

 

[Kati]

According to your quotation, "Morgan Fairchild is an actress who has suffered from M.E. for approximately two decades or more." Is this true?

How would I know whether it is true? you can take it or leave it. Why question it and why does it matter? does one need to be true sufferer to address the congress? If people oppose so much in CAA organizing a speaking engagement in DC, why not organize your own and do it better? Nothing preventing you.

Making assumption as of what is going to happen and protesting about what MAY happen is in my opinion just the wrong way to go. How about taking the opportunity to make yourself heard in social media while this is happening?

 

[Nielk]

How would I know whether it is true? you can take it or leave it. Why question it and why does it matter? does one need to be true sufferer to address the congress? If people oppose so much in CAA organizing a speaking engagement in DC, why not organize your own and do it better? Nothing preventing you.

Making assumption as of what is going to happen and protesting about what MAY happen is in my opinion just the wrong way to go. How about taking the opportunity to make yourself heard in social media while this is happening?

How do you know that this is not in the planning already?

 

[Nielk]

What do you mean 'doublespeak by the CAA'?

What I mean is, they state that she is a patient and an activist. Giving the impression that she is an ME/CFS patient and an ME/CFS activist. None of those are true.
She was an AIDS activist. Why not stating that fact?

 

[Ember]

Why question it and why does it matter?... Making assumption as of what is going to happen and protesting about what MAY happen is in my opinion just the wrong way to go.

Asking a question is the opposite of making an assumption.

 

[Kati]

What I mean is, they state that she is a patient and an activist. Giving the impression that she is an ME/CFS patient and an ME/CFS activist. None of those are true.
She was an AIDS activist. Why not stating that fact?

If Hillary Johnson, the author of Osler's Web is saying that she has been a patient for at least 2decades, I believe her. She is a credible source. You can check her stream on Twitter, @oslersweb. i didn't make her say that.

 

[Nielk]

Does the person speaking on our behalf even needs to have ME? Elizabeth Taylor didn't have HIV/AIDS!

Personally, I will take anybody who is willing to embrace the cause. Action is what is needed. This is an emergency.

If she is speaking up in support of the IOM report, she is not speaking up for me or for a large group of the patient population who are in opposition of the IOM.