PhoenixDown
Senior Member
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- UK
Who would you choose and why? Would you choose political figures in order to change policy? Would you choose a family member who disbelieves you?
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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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Who Do You Wish Believes In Severe ME?
- Thread starter PhoenixDown
- Start date
Who would you choose and why? Would you choose political figures in order to change policy? Would you choose a family member who disbelieves you?
Rebeccare
Moose Enthusiast
- Messages
- 9,066
- Location
- Massachusetts
Ooooh, this is such a good question!
On a personal level, I would like for my boss to not only believe in it but really understand how it feels. I'm sick of being asked: "Why can't you do this task? We can pay you for your time if you go over your hours."
And although my PCP believes that ME/CFS exists, I don't know how seriously she takes it and whether she truly understands the impact it has on all aspects of my life, so I'd add her to the list.
On a political level, I would love for a head of state (president, prime minister, etc.) to really believe in it and care. Here in the United States we're working on the head of the NIH, Dr. Collins, to believe in ME/CFS and take it seriously so researchers can get more funding. I would also love for the executive of a major insurance company to believe in ME/CFS and make sure that we get the coverage we need.
On a personal level, I would like for my boss to not only believe in it but really understand how it feels. I'm sick of being asked: "Why can't you do this task? We can pay you for your time if you go over your hours."
And although my PCP believes that ME/CFS exists, I don't know how seriously she takes it and whether she truly understands the impact it has on all aspects of my life, so I'd add her to the list.
On a political level, I would love for a head of state (president, prime minister, etc.) to really believe in it and care. Here in the United States we're working on the head of the NIH, Dr. Collins, to believe in ME/CFS and take it seriously so researchers can get more funding. I would also love for the executive of a major insurance company to believe in ME/CFS and make sure that we get the coverage we need.
junkcrap50
Senior Member
- Messages
- 1,333
Everyone. 
Gemini
Senior Member
- Messages
- 1,176
- Location
- East Coast USA
Good question @PhoenixDown.
To date severe ME patients have not been represented in the literature or case definitions so I'd like to see mainstream researchers and clinicians believe in it. Agree with @RebeccaRe , @junkcrap50 too.
@Tom Kindlon recently posted information about a proposal for a Special Issue of the Open Access Journal "Healthcare" titled "ME/CFS--The Severely and Very Severely Affected" to raise awareness:
https://www.dropbox.com/s/6lnhn6xo8d8eh2w/me_cfs_issue_Flyer.pdf?dl=0:
Pearshaped
Senior Member
- Messages
- 580
I would choose two VIPs of two different big Pharmas,two active and curious doctors from different fields like Neuro and Rheuma and one researcher.
Rufous McKinney
Senior Member
- Messages
- 13,363
Definately- would enjoy revenge on One White Coated Doctor...the starer.....
CEO of my Health Insurance- definately!
CEO of my Health Insurance- definately!
