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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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Just Gimme the Truth

Xandoff;249413 said:
After dealing with this illness for nine years I would like to "FLOAT" an innovative idea. Instead of waiting for the medical community to recognize us, or the politicians , or our goverments. Let us focus on "culling" all the meds and products currently available that can actually help Doctors understand us and to help us us cope with our human suffering.

Perhaps the Doctors and medical communities might be open to an APPROVED or "OFFICIAL" list of medications and supplements that are known to help the pain and misery that afflicts patients with ME CFS 24/7 365 days and nights a year.

I was fired by one Doctor and left another Doctor before finding a real ME CFS Doctor/Clinic that is 160 miles from my Home. One Doctor told me that they didn't know anything about ME CFS and they don't treat it. Honest Doctor....thank you.

There are many out there among us who really on sympatehetic Doctors to get the most basic care that doesn't address a tenth of our symptoms. These Doctors are reluctant to prescribe clonazepam or muscle relaxants or LDN and other basic needs of our community because they are in the dark as to how badly we suffer. The research is there to support this need. It is do-able.

I have come to the belief this is not the Medical Communities fault. They want to help us, they want to relieve suffering but they don't have any roadmap. We take more than 15 minutes to communicate (if we are even able) and our symptons are all over the map. We don't make sense to them. We are a "foreign" and difficult prescence in their practice and we try there patience at every step.

Anti-depressants and Psych referals dont help enough. Duh!

Lets face it...Doctors don't want to treat us because they don't know what to do with us and they have been told that our illness is not real or it is a conversion order or worse.....we are looney tunes. Maybe this will change in three or five-to ten years. (I will be the blue boy holding my breath in the corner)

Until then an approved list of medicines and supplements used to treat ME CFS might break the ice. Our symptoms need to be validated by authority and science that has already been done. I can't remember the all alphabet soup of names and organizations that raise money and awareness for ME CFS but I do know that many of these ORGANIZATIONS could put some ink to this very important matter.

Doctors like research and documentation. Lets give it to them!

Most of us are all too sick to have a million man/woman march on Washington. We don't have a Michael J. Fox to spot light our disease and to raise awareness. We do have the power of the PRESS.

I took this from the P/R Symptoms Forum as an example:

Forum: Symptoms

Sleep problems, pain, difficulty standing, rapid heart beat, blood pressure problems, flu-like symptoms, fever, irritable bowel syndrome, vertigo, cognitive problems, sensitivity to odors, lights, sound, clumsiness, disorientation, perception problems etc etc etc etc etc etc etc etc etc etc etc etc (these don't sound looney to me, but to a Doctor in a busy practice?

We don't need to wait till the next big thing.....somebody has the information, the research and the results that show there are ways to treat some of the symptoms of our ONE ROOM SCHOOL HOUSE THAT WE CALL ME CFS.

I am fortunate that I have a real ME CFS Doctor who helps me treat my sympoms. After 14 months on Valcyte (which did help some) I had my Nagalase tested and will be looking in GcMAF if my Nagalase is high. This rant isn't about me.....it's about the past treatment and experiences I have had. I would like to see people that are not getting their symptoms treated respectfully.

Just gimme some Truth (John Lennon)


Agreed. I think one way to do that is to contribute to the treatment section here. Everybody can share what is working and not working and we learn together.

Maybe somebody can start a thread when they get a good idea on a research papers to educate doctors, and get the ball rolling. I think much of that is here, it just takes some effort to consolidate it a bit in a thread that or document that distills the information.

The IACFSME treatment guide is on the way. I do not have a due date however. Once we have this published document we need to see it is distributed widely, including to every major medical association on the planet.
Psych. meds like anti depressants are also used for pain. As far as LDN, it needs some scientific proof. It anyone knows any trials on LDN, I would be interested in knowing. Sounds like a good idea.


Barb C.:>)
I don't think you will ever see research or trials on LDN because it is already invented, the patent ran out and there is no money TO BE MADE researching it. No money, no motive, no research. Just gimme some Truth.

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