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ME/CFS Alert - Episode 78 - Mary Dimmock

sarah darwins

Senior Member
Messages
2,508
Location
Cornwall, UK
Sheesh. I hadn't realised there were commercial providers of clinical guidelines. The one they discuss - Uptodate - is part of Wolters Kluwer ... "a global leader in professional information services. Professionals in the areas of legal, business, tax, accounting, finance, audit, risk, compliance and healthcare rely on Wolters Kluwer's market leading information-enabled tools and software solutions"

And they're recommending CBT/GET.
 

mfairma

Senior Member
Messages
205
Hey @shannah
I got it through a Rheumatologist in Florida, after trying Kineret for around 8 months or so. I posted about it once or twice before somewhere here. We have had to pay most of the infusions out of pocket, but have gotten the cost more under control in the last year or so by switching to a treat-to-target dosing schedule, where I only get infusions roughly once a year or if symptoms are beginning to worsen again.
 

valentinelynx

Senior Member
Messages
1,310
Location
Tucson
Sheesh. I hadn't realised there were commercial providers of clinical guidelines. The one they discuss - Uptodate - is part of Wolters Kluwer ... "a global leader in professional information services. Professionals in the areas of legal, business, tax, accounting, finance, audit, risk, compliance and healthcare rely on Wolters Kluwer's market leading information-enabled tools and software solutions"

And they're recommending CBT/GET.

Yep. And these are the sources that provide the guidelines that your insurance company uses to determine whether you qualify for an expensive drug or treatment. Access is limited by expensive membership fees, not public domain.
 

mfairma

Senior Member
Messages
205
Mary, my mom, never fails to be knowledgeable, articulate, and reasonable, all qualities of which this community needs more, but she lacks fire in how she communicates the problems in this disease. Our community needs more fire, much, much more, but balanced by knowledge, readability, and clarity of communication.
 
Messages
2,087
Mary, my mom, never fails to be knowledgeable, articulate, and reasonable, all qualities of which this community needs more, but she lacks fire in how she communicates the problems in this disease. Our community needs more fire, much, much more, but balanced by those other qualities.

The community needs fire but for me an advocate who is knowledgeable articulate and reasonable is to be cherished. Fire is good for getting attention and rousing the masses but once that is done the fire is less important than being articulate and knowledgeable.
 

mfairma

Senior Member
Messages
205
[
The community needs fire but for me an advocate who is knowledgeable articulate and reasonable is to be cherished. Fire is good for getting attention and rousing the masses but once that is done the fire is less important than being articulate and knowledgeable.

You can be forceful, fiery, and passionate, while still being articulate and knowledgeable. They are not mutually exclusive qualities.

Edit: But I do agree about cherishing those qualities in this disease. Certainly my mom's health makes it easier for her to be articulate than patients, but those qualities are something we need more of, I agree.
 

Comet

I'm Not Imaginary
Messages
693
Mary, my mom, never fails to be knowledgeable, articulate, and reasonable, all qualities of which this community needs more, but she lacks fire in how she communicates the problems in this disease. Our community needs more fire, much, much more, but balanced by knowledge, readability, and clarity of communication.
I didn't think she lacked anything. :) What a great interview.