Tuesday, January 19, 2021
Mitochondrial Health

What do we know about ME/CFS* in 2019? An update on current research



*ME/CFS is Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

Dr Eiren Sweetman
Post-Doctoral Fellow, Prof Warren Tate’s Research Team
Department of Biochemistry, University of Otago, Dunedin, New Zealand
alumni.otago.ac.nz/donate/myalgic-encephalomyelitis

Presentation hosted by ME/CFS Group Canterbury
www.mecfscanterbury.nz
Thursday, 31st October 2019, 7pm
The Atrium Function Centre, Hagley Park, Christchurch, New Zealand

Schedule:
00:00 Introduction by Anna Grenfell, RN, ME/CFS Group Canterbury
01:08 Introduction to ME/CFS
03:37 Research approach at the University of Otago
06:20 Proteome Study
13:19 Mitochondria function Study
18:33 Transcriptome (expressed genes) Study
21:25 Epigenetics Study
22:30 Neuroinflammation /stress centre Hypothesis
26:00 Cortene trial
27:20 Dr Rob Phair – the IDO metabolic trap
30:39 Dr Ronald W Davis & team – promising Nanoneedle diagnostic test
32:47 Growing collaboration
34:37 Questions
54:20 Thank you Dr Sweetman
54:53 The work of ME/CFS Group Canterbury
58:12 Summary Notes
58:41 For more Information slide

Thank you for your interest

For more information:
+ M.E. /CFS Group Canterbury – www.mecfscanterbury.nz
+ The Associated NZ ME Society – www.anzmes.org.nz
+ M.E. Awareness NZ – www.m.e.awareness.nz
+ CDC – www.cdc.gov/me-cfs/healthcare-providers

NZ Researchers involved in ME/CFS research:
+ Prof Warren Tate & team, University of Otago
+ Dr Lynette Hodges, Massey University
+ Dr Carolyn Wilshire, Victoria University
+ Dr Don Baken, Massey University

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23 thoughts on “What do we know about ME/CFS* in 2019? An update on current research
  1. Thank you Dr. Sweetman, this is an excellent talk. I've had so many questions on the state of ME/CFS research, only finding fragments here and there. You've put all the information together and presented it wonderfully, I am sincerely grateful. Thank you for your hard work, patients all around the world are really thankful and cheering you on in your efforts.

  2. I think you may have identified a contributing factor to the metabolic trap. The slide with the increase NO production, as NO inhibits tryptophan metabolism via the kyneurinine pathway.

    Also the abnormalities in kyneurinine metabolism can lead to sensory disfunction / neuropathic pain via glutamate/NMDA receptors and endogenous cytotoxic quinolinic acid (kynurenine metabolite)

    Memantine is neuroprotective against excitotoxicity caused by quinolinic acid. I had an 80% reduction in pain and sensory problems with memantine. Its effectiveness does diminish during PEM.

    Also what's the chances you can run a short trial on etifoxine? There is a safety study running currently in NZ .

    Why etifoxine? It is a tspo ligand and it alters mitochondrial metabolic states. I stumbled onto this because Ron Davis mentions at times that Ativan gives Whitney an energy boost (when he has to go to the hospital for tests) so I had to find out why, because he didnt know why. Lorazepam is a high affinity tspo ligand. The highest of all benzodiazepines.

    Etifoxine has a much higher affinity, without the dependence and tolerance issues of lorazepam.

    My daughters funeral is coming up on monday, my birthday, so I asked my doctor for a few days worth of lorazepam. He wouldn't have prescribed it otherwise.

    Last night I slept all through the night without waking once.

    And today I did physical work and social visits that would normally cause an immediate crash and I feel great. My little bit of soreness feels like proper deconditioning .

    I usually suffer cataplexy with minimal exertion. So far things look encouraging, just have to wait to see if a crash happens or not.

    I could barely walk monday, tuesday and Wednesday.

    Also I was able to have a lot of conversation without my throat seizing up with pain.

    Stamina being the highest it's been in 3 years.

    If you can look into etifoxine that would be fantastic. . I'm in the US and it's hard to get, since it cant be sold here. It's not prohibited though. And getting a chronic prescription for lorazepam is just as tough, even though I also have 3 anxiety disorders and autism.

    Also clonidine helped my orthostatic dizziness (get dizzy changing from vertical to horizontal and horizontal to vertical) and it prevented high spikes in HR when standing. Used to jump 40-50 bpm just standing, now its about 10, but grows the closer I get to the edge of my energy envelope. Outside of that and during PEM my resting HR is 15bpm higher and will bounce up to 50 bpm when standing and even higher during movement.

    Etifoxine was the main thing I wanted to communicate.

  3. It is Dr Ronald W Davis Professor of biochemistry and genetics at stanford university. I don't really understand why you keep laughing at their research. Do you think that it's a joke and nothing will come of it?

  4. Does anyone know if fibromyalgia is like or related to cfs/me or can you have both? Does research show some of the same physical and test results for people with fibro and people with me cfs? I love the OMF the open medicine foundation. Their research is so great too. Why can't we get real pain meducation. Doctors say it doesn't help. I can tell you it definitely helps.

  5. Thank you for this lecture. This type of posting is good to give to your Dr if they are deficient in understanding this disease. So few have even close to adequate training or information.

  6. Dr Sweetman, thank you so much for this wonderful synopsis of some of the exciting research coming out about ME/CFS. As a sufferer I try to watch several research presentations every year. But I've noticed that none of them really give an overview that can be used to explain our illness to others. I will be bookmarking this video to give to others as an excellent introduction to the issues we experience at a cellular level.

    ME/CFS Canterbury group, thank you for sponsoring this presentation, making sure it was recorded with good equipment, and letting the rest of us have access to it.

  7. Its a pathogen. The amount of ppl who came down with CFS after a viral illness is staggering…XMRV was on the right path but totally shut down by probably false testing which is exactly what Jude Mikovits claimed it was.

  8. As a patient who has suffered from ME/CFS for 39 years I thank you so much for the research! I did find the laughter and what one might call giddiness by the presenter was very off putting, believe me there is nothing funny about the agony this illness brings.

  9. It seems like you have to hit the lottery to get into a study & I truly cant believe there are no treatments (unless you have hundred of thousands of dollars to get treatment bcuz the best doctors want cash pay. Will not take insurance. Some people get lipid transfusions or LDN or even pain medication for which I am refused. The doctors don't at all care about the suffering. I can't even get a diagnosis because doctors won't do the exclusion tests or don't believe me when I try to explain my symotoms. Now I can barely even goto any appointment. I can't eat , barely use the restroom. I hope i just die in my sleep bcuz obviously nobody is going to save me….or even prescribe medications to lessen the suffering.

  10. I literally cannot think of a more severe and complex disease. I truly don't have any hope in finding the cause, test, treatment. There is like hundreds of things wrong with us at a minimum. I mean gene changes…..and on and on…..neuroinflammation….I mean is there nothing that can at least treat that? I guess not. There is nothing.

  11. Ron Davis is actually being denied NIH grants. It's like the NIH does not want researchers to find the cause. Its odd. Every researcher in every country has terrible time getting funding. Absolutely awful.

  12. most people with a microwave arent chronically ill because some people are more sensitive for microwaves, also the distance person/microwave is very important. The oven in another place is more safe. The radiation become less when the oven gets older.Some ovens give less radiation then others. In Russia the allowed radiation is less.

  13. Dear, now the cause of Chronic Fatigue Syndrome is found: radiation of microwave-oven(magnetron).
    To stop you have to eliminate the oven out of the house.Attention: radiation goes through walls, it can come from your neighbours.

    The distance between an oven and a person is very important.After a 3 months without microwaves health becomes better.
    The victims are more sensible and also the distance between victim and oven is important.After long time obesity is possible.
    (Also possible: nightmares,,depression,soar throught, pain in muscles, bad sleep.Most people with a microwave arent chronically ill because some people are more sensitive for microwaves, also the distance person/microwave is very important. The oven in another place is more safe. The radiation become less when the oven gets older.Some ovens give less radiation then others. In Russia the less radiation is allowed by law.
    I had much very positive reactions, some people recovered entirely. Sometimes not because it was being tired through other causes or diseases,not the real cfs.Take everyday a vitamin D supplement because almost everyone have to little.(attention: it cures only CFS,not other diseases with fatigue)

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