• Welcome to Phoenix Rising!

    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.

    To become a member, simply click the Register button at the top right.

OUR Tina Tidmore on the RADIO! ME/CFS Info Spread out Further!!!!

KRFC Radio Show Announcement

Tina Tidmore with the Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Worldwide Patient Alliance on Holy Hormones Honey!, March 7 from 6 to 7pm MST with live audiostream.

CFS, is a debilitating disease that affects millions of people in the United States. It's characterized by profound fatigue that doesn't improve with bed rest and can be exacerbated or re-kindled by physical or mental activity. Other symptoms associated with CFS include cognitive deficits, impaired sleep, myalgia, arthralgia, headache, gastrointestinal symptoms and tender lymph nodes.

Listen to the latest research on CFS via audio stream at http://www.krfcfm.org

:thumbsup: More public awareness like this is what will get the public educated and FORCE the doctors to get themselves educated when those sick come in, armed with knowledge from Radio interviews like this one, and implore their doctors to help them. Those doctors MUST deal with the patients - those are the people that pay them and so those doctors will indeed go and read what ME/CFS is and all that is involved. Bravo Tina!!!


It's easy to suggest that Doctors MUST deal with ME/CFS/FM patients, but most lose interest quickly when confronted with dozens of symptoms which may, or may not, improve with known drugs and/or other treatments.

I believe that while there are many caring, sensitive & committed Doctors who genuinely want to help their patients, there is the underlying pressure to deal with your illness in a short 15 minute consultation (in Australia) - don't know about other parts of the world.

If you don't respond to conventional treatment (for those symptoms), eventually even the most committed Dr's exhaust their knowledge, time & resources. The increased costs of staff, property rental & personal liability insurance alone forces some Doctors to push their patients through the "processing line" as quickly as possible.

It was some years ago that a Chiropractor told me her liability insurance had gone up to $60,000 per annum. She needed to have "xyz" number of patients & charge "xyz" fees to pay her ongoing running costs for her business (let alone her house mortgage & personal living expenses).

I admire advocates & people spreading knowledge & the latest research. Publicity certainly brings awareness, but you still have to find a Doctor willing to keep up to date with the latest research AND committed enough to follow your treatment through.

Of course, we as patients, also have to find the money to pay the out of pocket costs that Medicare (or Private Health insurance companies) don't cover.

I used to find it appalling that I paid a Medicare levy out of my salary (before I had to quit work 13 months ago) and had top Private Medical Insurance (which covered hospital, dental, optical & a host of alternative therapies), but was still out of pocket thousands of dollars per year. I just went further & further into debt over the years. (Hence my hesitancy when my GP wants to send me to a Specialist even now that I've paid off my debts).

I still pay top Private Health Insurance because I can't afford not to have it (going by the last 15 years medical expenses).

I might also suggest that Governments need to put more money into training Doctors, building hospitals & research centres to cope with the ever increasing Health needs.

I repeat your comment......Bravo Tina!.

But we need a hell of a lot more people like Tina to make a difference that moves Governments first, before we get down to the level of GP (or is it PCP in the US?).
Victoria said: "I admire advocates & people spreading knowledge & the latest research. Publicity certainly brings awareness, but you still have to find a Doctor willing to keep up to date with the latest research AND committed enough to follow your treatment through."

YOU are so very correct Victoria. We do NOT have the doctors that we must have to make the diagnosis and get us the treatments we need now for symptom relief and in the very near future, for prescribing and monitoring the probable anti-virals and other medications that I expect will be coming out shortly from the research being done by the likes of WPI and other great research orgs and individuals.

Tina Tidmore and MCWPA (the Democratic Advocacy group) are trying like crazy to GET to those doctors and educate them on all aspects of ME/CFS. We have several initiatives right now on Educating the Doctors. The current initiative is "Doctors Need To Know" and that has been quite successful. People understand that they can NOT find a doctor who understands or even believes in ME/CFS and so many of the ME/CFS sick have taken it upon themselves to provide doctors in their areas (and outside their areas as well) with a huge amount of information (and links to studies, etc).

This type of media event alerts and educates the public so that if they see themselves having the ME/CFS symptoms they will go to the doctor and that essentially forces the doctor to begin researching and learning what the patient is asking/stating/demanding. Remember, doctors can ramp up their practices big time quickly IF they are able to diagnose and treat the ME/CFS sick. We are big money to them. Using the media to educate the public (and doctors ARE also the public) gets all that critical information OUT THERE and does force the medical community to react - and that is what we all need.

I can NOT find a doctor where I now live that will treat my ME/CFS/FM. I have to fly back to Washington DC to get to a doctor that will treat me. But I consider myself lucky to have him and pinch pennies to get to him and then out-of-pocket now to see him.

So yes, we do have a problem with doctors not taking insurance or not wanting to deal with ME/CFS sick because we are time and energy consuming - BUT, with the massive research being done by WPI, Klimas, Bell, Cheney, and other top gun doctors and researchers, I do expect that there will be REAL protocols and REAL tests and REAL medications and that will cut way down on the amount of time and energy a doctor must spend on the ME/CFS sick. Test -->>Diagnose, Protocol -->>Treat - and then monitor for other diseases to tease out what is ME/CFS and a new disease (which would be the normal office visit anyway). Right now the few doctors dealing with ME/CFS have to deal with our symptoms and that requires a huge amount of time. Now if we do have tests and medications that kill off the Retrovirus/etc that moves medicine out of the area of "this is too difficult to understand/treat" and into "we test and medicate and cure". Boy does that cut down on time and energy needed from doctors and makes us ME/CFS people into cash cows - quick and easy. Sounds like a great win-win situation to me!

So, let's keep pushing that information OUT there to the public and the doctors. Support the research orgs like WPI and others for the tests and medications (clinical trials). And yes, do support advocacy groups that have been working hard and have proven they can and have made an impact. Look at what a group has done and not just what they say they will do. Easy to say it, super hard to do it.

Tina was the brainchild for the 6 December 2010 Washington Post Advert that really shook the policy makers in the US, UK and other countries. That Advert really scared the government types and made them most aware that the HUGE WE of ME/CFS are indeed out there, watching, screaming, donating, and beating on our enemies to force them to be honest and support our friends (WPI, for example). Hit the www.mcwpa.org site and see the Advert that really caused quite a stir. It was hard-hitting and set off a fire storm in many areas. And do get involved with MCWPA and other advocacy groups that are punching back at the governments for more funding -- and well trained physicians.
Tina - you were awesome :victory:

I was so happy with the length of the interview and also all the topics discussed. You touched on some of everything. You definitely got the point across on how debilitating this illness is. I liked the interviewer also, she seemed to have a real understanding of neuroimmune endocrine disorders and had terrific questions for you.

It's also exciting that you may be able to do more shows - you are inspiring to us all :thumbsup:

Blog entry information

Read time
1 min read
Last update

More entries in User Blogs

More entries from muffin