Michael VanElzakker, Shin Psychopathology Neuroimaging Laboratory A copy of the hypothesis paper mentioned is here: ase.tufts.edu/psychology/docum... Interview on Microbe Minded: microbeminded.com/2017/12/07/i...
Great interview. I liked the discussion about how hard it is to draw researchers into the field and that the only people doing this work are those who have friends and family with the illness.
It's so affirming to hear such good sense and science being talked about ME. The ignorance here is really shocking here at times. I wish more medical professionals were this well informed. It could stop so much damage being done.
Thank you so much, Mr Llewellon King, for all the hard work you put into making these broadcasts, it is deeply appreciated. I enjoy them a lot. They give comfort and hope to all us ME-patients. Also lots of thanks to Mr Michael VanElZakker for all his efforts within the ME - field. I contracted ME in the autumn 2009 as a consequence of the swine flu vaccination i.e. Vaxigrip manufactured by Sanofi Pasteur. This company is the same that produces the Gardasil vaccine, which has inflicted numerous teenage girls with untreatable ME. BTW, I understand some of the listeners expressed problems about hearing and understanding you. I am Danish and I have no difficulties whatsoever understanding your wonderful and impeccable British English. Perhaps the hearing problems could be due to the background noise? Anyway, God bless you Mr King, and may you and your loved ones have a fantastic new year. 😊🙏🌹
There is a small group of patients who have been rightfully diagnosed with Myalgic Encephalomyelitis as per the ICC 2011 or Ramsay? I had SPECT Scans which showed Encephalomyelitis and my Dr diagnosed me with ME/Ramsay in 2009. I became critically ill in Dec 2008 & spent a month in a private hospital in a ‘developing’ country. Everything is documented in my files. I owe my life to a Professor at University of West Indies, a specialist of Tropical Diseases, a Cardiologist and an ENT Specialist. I returned to Canada in 2011 because I needed better chronic health care. My Canadian Dr agreed with the ME diagnosis using the ICPrimer in 2012. My file now states that I have a viral caused acquired brain injury ‘ME’ and my medical team has tripled. I have never met a Dr who disagrees with my diagnosis and I have had to choose my doctors carefully because I have an interesting medical history. My concern is that those of us who meet the requirements of Myalgic Encephalomyelitis are being neglected by the use of ME/CFS/SEID and I would like to know why we have to die before we are taken seriously. I would like to suggest an interview with a patient who definitely has Encephalomyelitis so we can explain why we don’t belong in the Fatigue Criteria and to ask how those who fund research can sleep at night by calling it ME with the use of CFS Criteria yet abandon the 25% who cannot be helped with the use of Fukuda, CCC, SEID, Oxford, etc.... I’m not a doctor but I am part of a very sick patient group with authentic Myalgic Encephalomyelitis who are being neglected because the PR funding machine wants to prove prevalence in order to harvest funding. PS - I have cognitive issues and it took forever to type this comment. Thank you. Feel free to contact me. I’m on Llewelyn’s friend list.
I'm too tired to explain fully, but I was left for dead in Indonesia in 2010 with a rare brain injury which resulted in secondary parkinsonism and dystonia. I also have severe symptoms of ME and have been mostly bedridden for 2 years. Unfortunately, I'm poor, alone,and in the US (Oregon) without any specialist or anyone able to help my extreme CFS/ME symptoms. I feel like I'm dying....or barely existing
I saw a neurologist decades ago and he said my balance was affected, I had slow activity in the brain stem and my frontal lobe was affected altering my ability for academic work. I had to drop out of my degree. I did feel however my visual memory was fine and some years later got a fine art degree. However I’m still quite affected and now have skin symptoms with neuropathy…..it’s all horrendous
In 2019, my fourth year of illness, my most vexing symptom has been the inability to make eye contact with others for more than 20 seconds of conversation before immediately beginning to crash. Attempting to persist anyway leads to complete incapacitation for the rest of the day and often several days thereafter. I can’t help but wonder what this might have to do with dysfunction of the thalamus (and its role in sensory processing) as noted by Dr. VanElzakker. Likewise after always being a deep sleeper, my sleep now is extremely shallow. When there are noises at night, not only do they wake me, they are extraordinarily agitating - even the smallest sounds are like daggers in my head - way more so than during the day, where I experience mild persistent light/sound sensitivity. I have no doubt researchers are familiar with these symptoms by now but I’m sharing here in case it’s validating for someone else experiencing the same thing.
What I find mind boggling is the lack of consensus between the fatigue and cortisol and thyroid. Without replacing these hormones successfully we will never get well . Replacing cortisol via liquid form with a insulin pump is a incredible new emerging treatment option. I was in bed for the past three years untill a week ago. The insulin pump allows you to program in basal rates that replicate a person's circadian rhythm. This allows you to sleep again and wake up with morning cortisol like the body needs to survive. Without circadian rhythm we will suffer for ever . There are groups of people now online all over the world who are pumping cortisol. Again it's not about the cortisol its about the way your body is receiving the cortisol from the pump. This method of treatment has serious potential check it out lives are being saved with bye this.
That's interesting, because some people respond positively to the opposite, cholinergic activation! For example, many patients respond positively to pyridostigmine which increases acetylcholine in the NMJ. Also some people like me respond positively to cbolinergic supplements like alpha-gpc. It definitetly isn't surprising that it could go both ways though, since the autonomic nervous system heavily relies on acetylcholine and NRE to function correctly, so most of us probably have some kind of problem with those
I'm 39 and mostly bedridden due to severe symptoms of ME. At age 30, I had a rare anoxic brain injury which resulted in complete bilateral putamen (basal ganglia) infarct and secondary parkinsonism and dystonia. I have extremely stiff neck, light/noise sensitivity, migraines, tinnitus, exhaustion, brain fog and more. I had a long u months of mono reactivation in 2008, before my brain injuries. Now it's debilitating since Oct 20,2016, when I had 5 days of mono symptoms, including fever. I live in portland, Oregon and can't find a specialist ot help. I feel like I'm dying. I have a unique brain damage and yet no researcher has been interested.
Michael, the connection between MCAS, EDS, ME, is that they all involve functions of the beta adrenergic receptors. That is why EDS tests show no genetic cause in connective tissue production.
Good discussion, but the sound is unbalanced and it's hard to understand. It'll be great once funding can finally happen, there are many experiments just waiting to happen and just need the proper resources.
DON'T READ THIS IF YOU NEED HOPE DESPERATELY. This guy may be too real for this condition. He is onto the fact that this may well be a brain disorder triggered by stress in its many forms in susceptible individuals. And that it is not going to have a simple cure and that like cancer it is going to be different for everyone, and that it shares features of neurology, immunology, metabolism, and psychology (his background is neuropsychology and psychological stress). But getting as close as possible to the root of the problem, if it is in the brain or at the juncture of a combination of systems, will yield low-hanging fruit to help treat the illness like any other chronic disease so patients can have improved quality of life. Between his approach and Ron Davis's within 6-10 years we will have a diagnostic test. And clear ideas on how to develop therapies and drugs for this illness.
yep oxygen use is a very interesting aspect of CFS .... as a CFS sufferer last couple of months I've been becoming increasingly aware, that my breathing rate is close to null and it does not seem to be dependent on my activity level .... and when I do force myself to breath faster while performing taxing activity, my heart does pump faster, however my momentary ability to perform the exercise remains seemingly unaffected. As far as I can remember from when being healthy there was a direct increase in breathing rate while increasing exercise activity.
good but please record in a room without the furnace noises or whatever the awful noises were.. those of us with ME have a difficult time understanding voices and harsh sounds as it is.. LK is quite tough for me to understand with such thick english. Also any excessively loud, high-pitched, annoying background sounds such as used in Vice News is really intolerable for many of us.. and it seems to be trend which is not good multitasking filtering with comprehension, it is exhausting, even ME films do not get this, I have to exit a lot of films due to noise exhaustion.
The cause for me was the microwave oven. This may sound unbelievable: the internet states that the use is harmless or that the danger is cancer or a reduction in vitamins. The first consequences were: pain in the neck, fatigue, sore throat, depression, ..... After 3 months without a microwave oven these symptoms disappeared. Consequences are greater the closer the microwave oven is to you: if the oven is right next to your dining table, for example. If you bring this to your members' attention, those who wish can give it a try and let you know about their experiences. Everyone can now participate in the study! People will not think much of CFS. Organs are not damaged. It looks more like an internal strangulation. I don't know if that can be found. The muscles tense under the influence of microwaves (microwave), Hence the pain and the intestines are too tense, which makes digestion poor and too few vitamins are absorbed. In the throat one has pain due to the tensioning of the muscles there. Be careful not to cure other diseases with fatigue for CFS.
