ME patient explains we have the tools to enable appropriate care, yet no one is caring.

More to follow

Category:

Science & Technology

Tags:

• 2011
• Charlotte
• Von
• Salis
• XMRV
• Retrovirus
• CFS
• Chronic
• Fatigue
• Syndrome
• CFSAC
• Virus
• Testimony
• Advisory
• Committee
• Meeting
• HHS
• ME
• Ampligen
• AIDS
• advocacy
• XMRV/AIDS
• 2.0
• Lymphoma

[salchar]

 @sky10130 I would definitely get a second opinion! You may or may not have ME/CFS. Familiarize yourself and future doctors with the Overview of the Canadian Consensus Document on ME/CFS (it will come up with a Google search). Also check in with doctors who are familiar with environmentally caused illnesses. Many of them practice integrative or "functional" medicine. There are ways of getting rid of toxins or poisons, if that's what's going on with you. Good luck!

[salchar]

@MrLifeinthefastlane : I do badly with exercise, but am glad it helps you. I think if you did 50 miles before your body can handle 10 minutes now. What a shame that you've been affected by this cruel disease!

Hey, you know, any one of us can speak up. There are lots of opportunities. Check out when and where your health officials are speaking and do your own little rally! Get some posterboard, write a catchy slogan, and speak out!

[salchar]

@grannycfs: Looks are deceiving. I was very sick with M.E .and headaches in particular before this meeting. I barely had time to write this testimony, let alone edit it down so I could speak slowly for the five minutes we were all allowed.

So unfortunately I had to speak fast. The written testimonies are on the official CFSAC site now.

I attended only for a few hours despite living in the area. And I've been in a bad relapse ever since.

The CFSAC didn't know what SSA could do before I spoke.

[salchar]

@justinreilly1  Thank you for the slogan!!!

[MrLifeinthefastlane]

Great now we have to wait another whole year before we can speak out again, ANOTHER WHOLE YEAR OF PEOPLE SUFFERING without anything being done!!!

[MrLifeinthefastlane]

NIH how dare you, how dare you let so may suffer, shame of you NIH!!!

[MrLifeinthefastlane]

@salchar I met a Psychiatrist once and he said to me he doesn't believe in M.E/CFS, what a wanker!!! Hopefully there will be a cure one day, lets hope in time things look up! I used to be so active, I was cycling 50 miles everyday from that ages of 16-20 and a half years of age, now I can only do 10 minutes everyday and if I do 20 minutes I have a massive relapse which is horrendous. The 10 minutes hasn't cured me but it has helped my fatigue a bit.

[salchar]

Looks are deceiving. I was very sick with M.E .and headaches in particular before this meeting. I barely had time to write this testimony, let alone edit it down so I could speak slowly for the five minutes we were all allowed.

So unfortunately I had to speak fast. The written testimonies should be on the official CFSAC site soon.

I attended only for a few hours despite living in the area. And I've been in a bad relapse ever since.

The CFSAC didn't know what SSA could do before I spoke.

[grannycfs]

I suspect she was trying to tell as much to the CFSAC personnel in attendance as possible. They understand as they're not ill. That's just my theory.

[jetandjazz]

I wish people would learn that reading something so quickly makes it incredibly hard to listen to. From one PwME to another. :-)