Do you have a question regarding CFSAC?

[mango]

Good afternoon.

In an effort to increase transparency and address questions from the patient community regarding CFSAC, the CFSAC Support Team is putting together a list of frequently asked questions and answers (FAQs) to be posted on the CFSAC website.

We would like to hear about questions you would like answers to regarding CFSAC. We will include as many questions as possible. We will group similar questions together and reserve the right to edit them.

Please submit your questions to the CFSAC Support Team by Friday, March 17th at CFSAC (at) hhs.gov for inclusion in this first document. Any questions received after the deadline will be included in future revisions.

We will not reply to individual messages or respond to comments related to the FAQs. We encourage collaboration to reduce the number of redundant questions.

We will delete all emails once the questions are extracted and no names will be included in the document.

The CFSAC Support Team

Email: cfsac (at) hhs.gov

Website: http://www.hhs.gov/ash/advisory-committees/cfsac/index.html

Sign up for the CFSAC listserv to receive the latest updates about CFSAC: http://www.hhs.gov/advcomcfs/cfsac_email_list.html

 

[Laurie P]

Dear CFSAC Support Team,

In your effort to increase transparency and address questions from the patient community regarding the CFSAC, I have the following questions:

After decades of ME/CFS, this disease has left me cognitively, physically and financially devastated and so severe and in so much pain that I can no longer obtain medical or dental care. What are you doing to get SPECIALIST ME/CFS EXPERT CARE to the sickest among us NOW? We desperately need care through TELEMEDICINE and TECHNOLOGY. We can't wait. WE NEED BOTTOM UP CARE NOT TRICKLE DOWN CARE!!!

In the FARCE and FIASCO of the DISABILITY SYSTEMS and the ME/CFS climate of DISBELIEF and STIGMATIZATION, what are you doing to help patients get the disability benefits that we desperately need? What are you doing to help us so that we don't have to fight for years; further damaging our health, to get the benefits that we are entitled to? If we do manage to get benefits, what are you doing to help us keep them when they undergo reviews?

ME/CFS is a HEALTH CRISIS and everyone needs to be responding in this way and getting care to people with ME/CFS. No one would leave a person sick and in pain screaming and crying in a hospital room without care for decades, yet we're left in our homes like this, as though somehow we aren't worthy of care. When is this insanity, cruelty, inhumanity and discrimination going to stop? I'm one of the living dead being buried alive by this disease and furthermore by all of the bureaucracy. HELP US LIKE YOU ARE DESPERATELY, URGENTLY FIGHTING FOR YOUR OWN LIVES! When are you going to help us like this? What are you doing to help SEVERE PATIENTS like me?!

Sincerely,

Laurie P_____

 

[*GG*]

Dear CFSAC Support Team,

In your effort to increase transparency and address questions from the patient community regarding the CFSAC, I have the following questions:

After decades of ME/CFS, this disease has left me cognitively, physically and financially devastated and so severe and in so much pain that I can no longer obtain medical or dental care. What are you doing to get SPECIALIST ME/CFS EXPERT CARE to the sickest among us NOW? We desperately need care through TELEMEDICINE and TECHNOLOGY. We can't wait. WE NEED BOTTOM UP CARE NOT TRICKLE DOWN CARE!!!

In the FARCE and FIASCO of the DISABILITY SYSTEMS and the ME/CFS climate of DISBELIEF and STIGMATIZATION, what are you doing to help patients get the disability benefits that we desperately need? What are you doing to help us so that we don't have to fight for years; further damaging our health, to get the benefits that we are entitled to? If we do manage to get benefits, what are you doing to help us keep them when they undergo reviews?

ME/CFS is a HEALTH CRISIS and everyone needs to be responding in this way and getting care to people with ME/CFS. No one would leave a person sick and in pain screaming and crying in a hospital room without care for decades, yet we're left in our homes like this, as though somehow we aren't worthy of care. When is this insanity, cruelty, inhumanity and discrimination going to stop? I'm one of the living dead being buried alive by this disease and furthermore by all of the bureaucracy. HELP US LIKE YOU ARE DESPERATELY, URGENTLY FIGHTING FOR YOUR OWN LIVES! When are you going to help us like this? What are you doing to help SEVERE PATIENTS like me?!

Sincerely,

Laurie P_____

Like it, not sure what "bottom up care is" though? Is that a reference to our health care system?

GG

 

[Laurie P]

Like it, not sure what "bottom up care is" though? Is that a reference to our health care system?

I was thinking of grassroots movements where things happen from the bottom up not the top down or in economic systems where wealth trickles down from the top.

Applied to people with severe or very severe ME, we need immediate care, not after research infrastructure is built and biomarkers are found and doctors are educated etc. etc. etc. and care finally trickles down to us. We need triage. Some of us aren't going to make it. The sickest patients need care first not last and some of us aren't getting it at all because we've gotten so sick. Likewise, it's not right that people well enough to travel and with resources have access to care that others don't or that patients with able bodied people to advocate for them and help them may be able to get care while others can't. CFSAC needs to be getting care to people that seem to be at the bottom of everyone's awareness and agendas.

I hope this makes sense. My brain needs a long rest now.

 

[Rowena Ilagan]

The Chronic Fatigue Syndrome Advisory Committee is putting together a list of frequently asked questions and answers (FAQs) to be posted on the CFSAC website. Submit your questions to the CFSAC Support Team by Friday March 17 at CFSAC@hhs.gov. For more information about CFSAC, go to http://solvecfs.org/9236-2/

 

[Jennifer J]

The Chronic Fatigue Syndrome Advisory Committee is putting together a list of frequently asked questions and answers (FAQs) to be posted on the CFSAC website. Submit your questions to the CFSAC Support Team by Friday March 17 at CFSAC@hhs.gov. For more information about CFSAC, go to http://solvecfs.org/9236-2/

Edit: @Rowena Ilagan, I just looked at your information page. I was thinking you worked for CFSAC. You were probably only posting this as a fellow person with ME/CFS to let us know. Sorry. I guess what I just posted below wouldn't be something you can do anything about.

@Rowena Ilagan

Oh, no. I just came back to read when this is due, I was thinking it said May. I can't possibly do this by Friday. It's two days away. (I struggle to get government forms back in 10 days and other things suffer for it.) I need to be more rested to be able to try to articulate what I want to ask and it will take a lot out of me doing so. (Different mental tasks and writing varies in ability for me with how ME affects me.) Also, I have other pressing matters I'm struggling to do.

Thank you for posting this. Can this date be extended by a month or so? Or can people who can't make this deadline still submit questions after and have them answered and posted? Short notices, are hard if even possible to do for many of us with ME. Thank you for your help.

 

[Rowena Ilagan]

@Jennifer J, yes I'm also an ME/CFS patient sharing some news that might be helpful to other patients. I will ask if that committee will still accept questions beyond the March 17 deadline.