ME/CFS Alert, Episode 121: Interview with Dr. Byron Hyde of the Nightingale Research Foundation

[@craig543]

As a teacher with now severe ME, your words particularly resonated with me. I'm campaigning to get ME taken more seriously in my small country.

[@colleensteckel616]

Excellent interview. The textbook recently released, Understanding Myalgic Encephalomyelitis, is well worth the cost to better understand the history of ME and the connection to polio and the recognition of how it is contagious. From the book: "In epidemic situations, M.E. appears to be as contagious as Poliomyelitis in susceptible populations. In M.E. and Polio the infective period may extend for the first few weeks of clinical illness." Good to hear him clarify the difference between ME and CFS. From the textbook: "ME/CFS: this is a false title for Myalgic Encephalomyelitis /chronic fatigue syndrome which assumed that both conditions represented the same, identical disease. This is incorrect." This point is clarified in the textbook as well as in the "Missed Diagnoses" book mentioned in the video. I agree it is time we had medical recognition of the importance of prompt diagnosis with research into rapid testing for these enteroviruses as well as the importance of thorough screening of chronically ill patients. Thank you for doing this important interview!

[@Ninjamom4]

Excellent interview. I would like to hear more from Dr. Hyde.

[@annespacecoast]

Dr Byron Hyde knocked it out of the park as always! Best ME interview EVER!!!!!!

[@levisnir]

Thank you so much for this, Llewellyn and Dr. Hyde!

[@jamesg324]

Fascinating interview, thank you very much. Dr Hyde is so knowledgeable I think a follow-up interview would be very worthwhile!

[@willowithywindle]

Thank you as always.

[@nanallen1]

Gee, I have so much to say - as a biologist ( clinical diagnostic microbiology)/ ME/CFS/ FMS for 22 years, large support group leader 13 years. #1 I have been so impressed by what Dr. Pierre Kory and colleagues have done to look at approved drugs with antiviral/antiCovid properties and find that early use of Ivermectin is both prophylactic and essentially curative. I feel certain that many of us would volunteer to try a course of potential antiviral drugs with known safety protocols. #2 Yes - there certainly appears to be an underlying infectious organism. My son got sick in 1985, age 5. He has never totally recovered. But interestingly, a doctor early on thought to do the complete EBV panel, then again 8 months later. All results consistent with EBV. Three friends had it too, but got well in 3-4 weeks, and the kindergarten teacher missed a year of school. I believe I had a “round” with the virus in 1988 - sick for 1 1/2 years, got mostly better, but total relapse following neck/ pelvis injury 1998. #3 There are these questions : Why does ME/CFS seem to run in families ? ( my Mom also had it) and why do women make up the majority of the cases ? Why are these groups more susceptible to CNS viral infection ? To understand this it seems critical to understand how the CNS functions, and what issues interfere with proper function and cause dysregulation of CSF flow between the brain and sacral bulb and abnormal pressures in the brain. #4 Here is what I learned during 22 years of struggling to understand and trying everything to get better( bedridden 1 year) - including 3 expert neurosurgeons. One was tethered spinal cord expert/ had CINE MRI/ urodynamic studies. To understand what is happening in the brain, we must appreciate the minute movements of the cranial bones and the reciprocal motion between the occiput and sacrum that pumps Spinal fluid between the sacral bulb against gravity to the brain. Powered by inhalation and exhalation. This has been well described by the great osteopaths - Sutherland/ Upledger, and more recently in the SacroOcciptal chiropractors in a detailed volume : Chiropractic : The Anatomy and Physiology of SacroOccipital Technique by Jonathan Howat, DC, DICS. ( Available at SORSI site) I actually took this book to one of the expert neurosurgeons , former Chief at Loma Linda. He read it. I asked, Is this a correct understanding ? He said nothing at first, walked around the room, looked out the window, and said “ It will take 20 years.” #4 So what are the physical factors that might put people, especially women, at risk for viral invasion of the brain/ CNS ? Can we begin to look carefully at the ME/CFS/FMS populations to see if they share these characteristics? : scoliosis ( me, son, Mom ) , hypodevelopment of the occiput and sacrum ( me) and maxillae ( me - teeth roots poking right into sinuses), short clivus bone, steep angle of the tentorium ( me ), loss of neck/ lumbar curves ( me - shown in high % of FMS by Katz). Many years ago Hansasuta/ Tubbs/Oakes neurosurgical team published that 3 out of 27 normal cadavers had an off midline fusion of the filum terminale to the dura in the sacrum. Does this create a torque in the entire neural tube ? Does this promote sacral instability when sacral ligaments are compromised ? ( fall on tailbone, pregnancy/ childbirth/ especially in wide, female pelvises ? ) Are off midline fusions possibly related to malrotations/ malattachment of the gut ? ( long, redundant colon ( me) may be a variant of malrotation) 20,000 breaths a day, unbalanced core ! Since women have wider, inherently more unstable pelvises, are at least 80% of the scoliosis cases, is this related to why they are more susceptible to this spectrum of ME/ CFS/FMS disorders ? The upper neck is very much affected by the sacrum/ pelvis. So, problems develop there too. Sorry to go on so long. As these wonderful doctors point out, there has been so little progress in this disorder. A tragedy for so many. Maybe it is time to explore new paradigms.

[@finette4444]

Thank you so much Dr Hyde

[@KidCity1985]

The 1sr week of February 1996. Thank you both. Please keep fighting.

[@SPYDAWMN]

ty Lewellyn & Byron Hyde! I was in remission from ME - now have a new ANS disorder.

[@kellyvendrasco1945]

Was seen by Dr. Hyde in 2002 and trying to get in touch with him again with regards to my failing health.

[@MP-uo6qd]

did he help y ou?

[@kellyvendrasco1945]

@@MP-uo6qd he did send me for a ton of tests in Ottawa and Montreal. He wanted me to get testing done in the states that Canada did not do at tbe time and would have been quit costly so unfortunately I did not get those blood tests done. He wanted to do a follow up I think 2 years later but I couldnt afford to travel back to Ottawa at the time. But he was extremely thorough. Found a ton of findings in my test results. But I had no luck. My drs where I lived were able to help me a bit with regards to some of my findings. It was very unfortunate I could not get a Pet Scan done here. I was treated with an antiviral for 3 or 6 months from my Dr. But once she retired my new Dr didnt follow up with my diagnosis. So over 20 years later now im not certain if I do have Myalgic Encephelomyletis. I had no luck finding a Dr here that would do any testing. The only brain scan they would do is an Mri. If I could afford it I would go to the states for testing. But unfortunately not an option for me. So I believe im left with an untreated illness. Sad to say! Good luck on your health journey! Sending prayers and healing vibes your way. I have purchased Dr Hydes books. Very interesting!!

[@raymondgilmour1533]

Excellent interview.....great help...thank you.

[@Citlecrewolf]

Thank you.

[@StartFromScratch1]

interesting thank you. It would have been interesting though to know how he treated his patients... 😔

[@Gina-dn6xm]

Still no treatment May 2024