Talking to Doctors about ME/CFS #2

Full "Talking to Doctors/Convincing People" video playlist:
• Talking to doctors abo...
My ME/CFS resource site: cfs-me-navigator.com
*I am someone who was on the edge of very severe who has improved over the course of 5 years to moderately severe. I am still in a reclining wheelchair outside the home.
TREATMENTS
Low Dose Abilify (LDA) translational-...
Low Dose Naltrexone (LDN) www.frontiersi...
Valcyclovir
pubmed.ncbi.nl...
Ketotifen (a mast cell stabilizer) is also being used to good effect by Stanford and by Dr. Nancy Klimas' clinic. No studies yet.
More treatment info: cfs-me-navigat...
About the deeply flawed Pace Study:
(research)
www.qeios.com/...
www.ncbi.nlm.n...
www.ncbi.nlm.n...
pubmed.ncbi.nl...
Treatment Harms To Patients With Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
www.qeios.com/...
(Articles)
www.statnews.c...
www.npr.org/se...
www.npr.org/se...
The international Consensus Criteria can be downloaded in pdf form here: www.researchga...
AUTHORITY/PROOF for DOCTORS
The CDC website: www.cdc.gov/me...
Stanford's Center: med.stanford.e....
Harvard's center: endmecfs.mgh.h....
Colombia University's Center: www.publicheal...
Biomedical Test for ME/CFS by Stanford (not yet able to be widely distributed sadly)
med.stanford.e...
About the deeply flawed Pace Study (and CBT and GET):
(research) www.qeios.com/...
www.statnews.c....
www.npr.org/se....
www.npr.org/se....
Stanford's Blood Test:
med.stanford.e...
MRI differences: translational-...
About the Gut Microbiome: www.ncbi.nlm.n...
RESOURCES FOR DOCTORS
U.S. ME/CFS Clinician Coalition Resources for Doctors: mecfsclinician...
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Essentials of Diagnosis and Management (Mayo):www.mayoclinic...
Resources for Medical Providers Caring for People with Myalgic
Encephalomyelitis/Chronic Fatigue Syndrome (U.S. ME/CFS Clinician Coalition) mecfsclinician...

[@heartofthematterlanguage]

The idea of bringing in a diagnosis sheet with symptoms highlighted is absolutely brilliant! I think I'm going to do some role play with my husband before I see a new doctor in a couple of weeks, to help me prepare. Thank you so much.

[@catherinefarley5351]

Corey, Thank you so much for all the work you have done to put together these videos and resources. I talked to my GP yesterday using your tips and she is not knowledgable about ME but very receptive, took my highlighted list of symptoms from the International consenus doc and wants to help. I am fortunate to have a functional medicine doc that already agrees that I have mild/mod ME, but just looking for the validation on the western medicine side as many out there may not take the functional medicine side seriously. Thank you Thank you so much for removing the "how do I approach this" worry. I am grateful! All my best to you!

[@corey-me-cfs]

So glad everything was helpful!

[@CricketGirrl]

I actually did a lot of this when I started seeing my new primary care provider last year. I brought a letter of introduction that described myalgic encephalomyelitis, which of course she had never heard of. I printed information from the CDC site and attached it. I don't know how much of it is just that she's amazing, but I'm sure it didn't hurt! Saying chronic fatigue syndrome pretty much guarantees their brains will shut down, and the provider will immediately become useless. I call it. Acquired CFS-Deficient Brain Syndrome.

[@corey-me-cfs]

Saying Myalgic Encephalomyelitis is a game changer. Go you for going in prepared!

[@mihakavcic7237]

So CFS/ME it's a new neurological realety, lower neurotransmiter conections?

[@corey-me-cfs]

The neurological effects seem to be caused by brain/spine inflammation. It's among other things an inflammatory condition.

[@jennieodonnell6099]

thank you . these are great videos.

[@corey-me-cfs]

Very welcome!

[@danmoulton4218]

My doc calls it post viral condition. Finished

[@corey-me-cfs]

ME/CFS is a post viral condition, but your doctor probably doesn't understand/hasn't heard of ME/CFS. The resources for ME?CFS for doctors are under ME/CFS not "post viral condition". See doctors section cfs-me-navigator.com

[@PaulKitching11]

How about just walking in and asking them why the fuck am I telling you about ME when you’re supposed to be a doctor and then ask them to go away and do their homework and come back when they’re actually qualified to treat you ?

[@corey-me-cfs]

Likely when they went to medical school it wasn't taught or it was literally a 2 minute aside in one lecture. It was also likely taught as "psychosomatic" unless they graduated in the past few years. They simply weren't taught it. The CDC only changed their guidance 7 years ago and Great Britain's guidance changed just last year. Now with Long Covid there is much more awareness of ME/CFS so you can make actual headway by emailing them reasorces.

[@PaulKitching11]

@@corey-me-cfs that is true yes. It is the system to blame more so than individual doctors in a lot of cases. Do you think there’s a lot of people who think or pretend to have it ? It’s also a trend these days.

[@corey-me-cfs]

I think the number of undiagnosed people is WAY higher than people who "pretend" to have it. @@PaulKitching11

[@PaulKitching11]

@@corey-me-cfs see this is the problem. You don’t admit that factitious disorder exists. Or that people are very depressed or deconditioned and convince themselves they have ME. They go to the doctors, the doctors can see through it. And then real sufferers get put into the same bag as these people and ME itself gets seen as not real. They are also the same people who tolerate the term CFS. Don’t tell me you haven’t seen them on social media.

[@PaulKitching11]

@@corey-me-cfs by validating these people it renders real sufferers less believable and ME less credible.