Thus far the NIH’s big Clinical Center study is looking good. They’ve cleared up the definition problem and are focused on post-exertional malaise.
This is a different kind of study, however, than the NIH usually does. It’s an exploratory study. It’s goal is go where no man or woman has gone before with ME/CFS and find new answers. Because of this it’s cast its net wide; it’s looking everywhere from the brain to the gut. But are the nets being cast where the fish are? The body, after all, is an incredibly complex place; there’s lots of room for gremlins to hide out in – lots of room for them to disappear.
The Clinical Center Trial- What do you want in it?
We want this study to make a huge difference. We want it to uncover some abnormalities that stick – that provide a foundation for a new era of research at the NIH. This study has that potential. Led by a top researcher at a top facility it will get attention.
One thing is concerning, though – the lack of outside input. It’s great that Ian Lipkin is involved but Ian Lipkin is not an exercise physiologist or a neurologist or an immunologist. We’re not immunologists either, of course, but the ME/CFS community is widely read and we have our bodies as our personal samples.
I say lets use them and tell the NIH, what, if they could build the perfect study what would be in it? What positive test results have you had that you would them to be sure to check out? What research areas are you interested in that you’re concerned they might be missing? What people would you want them to consult with? What about ME/CFS would you want them to realize that they might not know right now? Remember, except for Dr. Lipkin none of these researchers have studied ME/CFS.
After a couple of days, I’ll collate the results and send them into the prinicipal investigator, Dr. Nath, and to Dr. Koroshetz.
Here are the tests from the draft (incomplete) study protocol:
- Two-day exercise test
- Autonomic Nervous System – sweating and breathing, being upright (apparently tilt table), blood pressure, and heart rate.
- Cortisol (presumably) – saliva test
- Cognition
- Heart monitoring
- Breath tests overnight – (small intestinal bacterial overgrowth?)
- Transcranial magnetic stimulation
- Functional MRI – the participants will do thinking AND exercise tasks in the MRI
- Spinal Tap
- Microbiome – gut, saliva and skin
- Blood Testing – specific ones not listed
For me
• Talk to Ron Davis – Ron Davis basically birthed this project with his grant proposal’s asking that the NIH fund a similar project. He and his fellow researcher have gone over and over again and again on what to look for. Davis has already begun to pick up new findings. His group has a wealth of knowledge that the Clinical Center trial researchers could draw on, yet Davis has not been contacted. That’s a missed opportunity.
• Talk to Staci Stevens – the exercise portion is the critical part of this study. Different exercise protocols have been used in ME/CFS but if the NIH is going to do a two-day exercise test, they need to use Staci’s protocol. They also need to learn how to get sick ME/CFS patients through those tests safely.
• Replicate the Japanese Neuroinflammation Study – and talk to the Japanese. In what may be the most significant finding of the last five years, the Japanese used a PET scan to find widespread neuroinflammation in ME/CFS patients brains. There is no mention, however, of a PET scan in the draft protocol of the Clinical Center study. The Japanese have upgraded their approach and are probably in the middle of their study right now. They undoubtedly have things they’d like to share. A major exploratory without an attempt to find neuroinflammation would be a missed opportunity.
Talk to Julia Newton about the Autonomic Nervous System – with her studies showing that the muscle problems in ME/CFS may be connected to the brain problems Julia Newton could be on the verge of cracking this disease wide open.
Talk to Alan Light about his exercise and gene expression findings. Alan Light’s graph of muscle metabolism and other markers going banana’s during exercise is still the most striking ME/CFS graph I’ve ever seen.
Talk to Mark VanElzakker about his vagus nerve findings. VanElzakker is looking right now for signs of vagus nerve inflammation. He may have something to pass on
Do the exercise portion as early as possible in the study to get the full effect of exercise on all the other tests
Chart the reactions to the exercise at least over two days. My reaction to exercise is worse the day after and sometimes the day after that.
Check out the autoantibodies found in POTS.
I would add do detailed gynecological histories! The CDC studies on gynecology were just stunning!
What types of gynecological studies would you recommend in reference to ME/CFS studies? Other than hormone testing I’d not heard of anything relating these 2 areas before, so I’m curious as to your recommendation. Now I will say that my case started after having major gynecological surgery where I picked up a case of MRSA. I was living the proverbial wild & wonderful life, but never came back after that surgery. I also have Ehlers-Danlos Hypermobilty type, if that concerns anyone. Thank you for all that you do, Court!
The CDC simply looked at gynecological issues people had before and after ME/CFS. They found tons of them and so did a survey on the Health Rising forums.
I would like for them to look at sleep studies for all of us ME patients.When I went for my sleep studies, all three of them, to see why I was on refreshed every single morning( it didn’t matter if I was on vacation or not).I asked them simply to find the root cause of my terribly unproductive sleep and treat me. Why is it that sleep architecture is so screwed up in our population? Why is it that so many of us have restless leg syndrome as a comorbidity? With these things I would be very grateful! I’m still bargaining with my higher power that if he gives me one night of good sleep and one morning of refreshed feeling I would be good forever.
I think reactions to the CPETSs should be tracked for several months. I did a 2 day CPET last June, and have yet to recover. The long term effect of exercise on patients should be documented, if the study patients agree to such a risk.
Cort,
Are they going to be looking at dopamine, seratonin and other brain chemicals?
Has anyone looked at CFS from the perspective of other hormones? estrogen? testosterone? DHEA?
I also have a comment on apparently a new format of this page and others like it. For me the picture block of the sender covers up the first part of the message.
Again….THANK YOU!! Happy Valentine’s Day for all the Love you give to us all with your service
After a couple years of doing fairly well (20 years sick), I pushed way too hard nine hours helping a friend move – packing and hauling boxes all day. My previous TSH four weeks prior was .74. Three days after this day (and very sick and symptomatic) my TSH was 7.4. A ten fold decrease in thyroid production that will take months or years to recover – if too much damage wasn’t done. Eyes were painful too, as well as pancreas. I’ve had test results with very raised thyroid antibodies in past when I felt like that. Need to push doctor to check pancreatic antibodies (dad developed autoimmune Diabetes Type 1 at age 42.). Researchers need to be measuring increased antibody response to exercise – paying attention to family/personal history as to which antibodies to measure – before and after.
There is a growing concensus that ME/CFS might in part be a result of activation of immune cells in the brain called microglia. So please consider drawing their attention to this, Cort.
Here is a link with more information from the ME Association’s website in the UK:
http://www.meassociation.org.uk/2015/10/post-exertional-malaise-in-mecfs-medical-research-council-announces-new-neuroimaging-research-16-october-2015/
The relentless headaches and short term memory loss are a problem for me. Can this be addressed in the clinical study? Have been dealing with these problems FM/CF for 30 yrs, am getting a little worn down.
The right kind of cognitive testing should work for memory loss and your headaches even if they are not migraines reminds me that they should be careful about diagnosing since Baraniuk found such a high incidence since he looked closely.
Yes Carol they are also bad for me. I’m either in extreme pain because of migraine or won’t talk because I forget my point, names, information constantly.
I’ve always had ADD and Dyslexia but this is worse, Rita
What triggers ME/CFS? Does black mold have anything to do with it and how do you test for it (nasal, etc.). What about history of Lyme disease, mononucleosis, measles, mumps, chickenpox, pneumonia, allergies. Will treatments for MS help ME/CFS? What about treatments for mold? Through my allergy tests of about 40 years ago, I am allergic to all mold and all pollen. Is that common with ME/CFS patients?
That’s a very good question! In my case and that’s all I know, is I had silver fillings replaced back in the mid-80s without dental dam and I also had a nervous breakdown around the same time and I came down with the flu not too long after that which never went away and then became kind of like MS in terms of symptomatology even though all the tests were normal except the CPK was up. I had weakness on my right arm and leg, Sevier to see equilibrium, heat intolerance, inability to sustain activity and extreme anxiety. I hope you find answers but I bet mold could trigger something like this. There are so many unknowns but Thank Goodness Cort Johnson is doing something about it !
Hi Kate,
I also have a slightly elevated CPK. How high is yours? Mine varies from 300 to 600. Also, I am having muscle weakness and anxiety. if you suspect mold, then you should visit the website biotoxinourney.com.
Hi Chris, it’s been 29 years since I came down with this so I don’t know but my CPK was slightly elevated and they did not consider it clinically significant. They did a nerve conduction velocity and E MG tests on my legs and found no abnormalities. It’s a degrading when you feel like a weak ragdoll and they tell you your normal! In my case mold did not play a factor. But I wish you health and healing on your journey to wellness.
Thanks Chris, mold was not a factor. I had slightly elevated CPK but nothing more. I wish you health and wellness wellness in your journey toward wholeness .
I agree – I have heard that some vaccines in the 1960’s were contaminated and that it had a link with chronic fatigue. I also had mono, and have allergies to mold and reactions from exercise.
Monitor HR continuously and with accelerometers at the same time, so as to see what the pwME. The abnormal HR response to exertion must hold some keys? PwME often have tachycardia BUT they also have spikes way down to way up when they exert themselves too much- on rest HR will settle at a higher rate when resting. HR after exertion rises quickly… And higher than usual for a number of days. HR can DROP when too much exertion, this is accompanied by a tight feeling in the chest and a HRV indicative of stress. The day after exertion a pwME may have a LOWER resting heart rate than normal, HRV will indicate stress. The following day the resting HR may be high and symptoms of post exertional debility set in. HR and HRV will take days (weeks/months to return to “normal”). For the profoundly ill- years. HR and HRV are being increasingly used by patients to mange ME. The HRV and HR data provide a window into the disease – quantification and guideance needed.
Can acetylcholine levels be measured? Can the works of the National Centre for Neuroimmune and emerging Diseases be quantified? Multiple chemcal sensitivities- urticaria sub group?? Is 40 people enough for a heterogeneous disease? What about 200-400??
Thank you for asking! you need to ask Dr Peterson as he has been expert in the diagnostic and treatment of ME/CFS for over 35 years! He will know what labs are important, what subgroups might show up, and how to protect the patients’ health and wellbeing and make sure the study is done to the best possible outcome.
Anita, where is Dr. Peterson please?
dr P is in incline village nevada (tahoe)
Cort, I feel someone that is very much overlooked is Bridgette Huber PHd at Tufts University. She has worked on several studies involving CFS,NIH funded, at least one with Komaroff. Oakes B, Hoagland-Henefield M, Komaroff AL, Erickson JL, Huber BT. 2013. Human endogenous retrovirus-K18 superantigen expression and human herpesvirus-6 and human herpesvirus-7 viral loads in chronic fatigue patients. Clin Infect Dis. 56: 1394-1400. Her studies often involve part of the thousands of kids that get mono, then develop CFS- then study those that recover vs. not. Here’s a study group every year!
Food intolerances – are they to be detailed. Commonly – diary, gluten, preservatives, alcohol, sugar, high food chemical foods. Royal Prince Alfred Hospital (NSW allergy clinic Australia) elimination diet helps many. FODMAPS diet helps others. Environmental triggers – latex, VOc’s, hair products, gas, perfume, cigarette smoke, petrol, fabric softener.
Are they looking at brain fog and neurological symptoms increases after mental exertion? Why does 2 minutes trying to learn Spanish on a video game resut in seasickness, brain wobbles and brain “explosions ” for over 2 weeks.
Early on in the disease we push and push to retain our lives YET when we look back we were obviously so so ill?? What causes the denial? Stigmatise? Disbelief? Cognitive dysfunction? Our brains seem to fail us? Is something wrong with the executive processor??
Hello, very good question! I myself was in a professional career and had no type of disability insurance so I had no choice but to muddle through,as sick as I was and believe me it was torture . I had to see two patients per hour and I really don’t know how I did it! I was too afraid to mention it to anyone because I was dealing with patients that were sick and I was afraid that I would get fired. And there was also a fear that I had MS which was the scariest thing ever. Appearing well makes us afraid that people won’t believe us. My mother, God bless her, told me it was all in my head when I told her I thought I had MS. That’s taught me to keep it to myself.
I would like to see stem cell research.
Disability – Many of us are so debilitated although we may look fine to others. I’m hoping there be a component (or a by product) of the studies to measure disability.
I know one thing that was weird with me. And I don’t know if it’s a diagnostic thing or not? But when I had palpitations for so long and the halter monitor was normal, I had a stress test on a treadmill and the cardiologist said my heart rate went up way too quick for somebody who is fairly active and fit and my blood pressure went up what it was supposed to go down and down it was supposed to go up. So I guess a treadmill stress test might be part of the diagnosis.
I’m not nearly as sophisticated as many here are about various types of tests and protocols. But I do live in one of the bodies mentioned above, one of the bodies taken over and taken down by ME. My wish for the study would simply be that someone would look for the cause of relentless, daily low-grade fever!
I rarely hear fever spoken of on these forums; it’s a symptom typically found at the bottom of most “might also experience”-type symptom lists. It’s inflammation without a doubt, but where? Is the right half of my brain inflamed? (thanks for the brain scan study, Stanford). Is this the root cause of all my other symptoms?
I first noticed, after a months-long bout of mono during my college years (late ’70s) that any time I’d stay up too late or push my body just a little too hard, I would feel feverish. But I ignored it and was able to live a normal life. I even became a gym rat and a weight lifter. In my mid-forties, I was in the 98th percentile for strength in my age group. I had a resting heart-rate that would have made Lance Armstrong jealous.
Then in 2012, I had an unusual health crisis: a splenic infarct. They slapped me in the hospital and conducted every test they could possibly think to bill to my insurance. I never recovered, and neither did my insurance.
Now I’m mostly bedridden, and ANY exertion, be it mental, physical, or emotional, will bring back that low-grade fever, and with it the accompanying ague, or flu-like feeling. Plus every other symptom in whichever ME symptom list you’d wish to consult.
I’m unable to take NSAIDS, so I live with the fever on a daily basis. Any advice or input on this would be welcomed with open arms. But my wish list for government testing? Find the root cause of the inflamation and find at least something that would provide relief from it.
After a three-year search for a doctor who had any CLUE as to what was causing my symptoms, I left Austin, Texas and went to Houston, where I found Dr. Patrick Solcher. I think it was just blind luck that I found him, but he had treated others who had ME, so I was not his first patient. He read the charts and test results I had amassed since the 2012 infarct incident, and after an hour or so of interviewing he knew exactly what was wrong. The only problem was what to do about it.
We’re still working on that a bit, but he has helped me enormously. So my second wish for the NIH study – keep doctors like Dr. Solcher, who are on the front lines INVOLVED in this research. Ask THEM what they know, what they’ve tried, what has helped, what has not. I believe a HUGE missing component, aside from carefully qualifying who truly IS an ME patient, is the ME doctors, the people who are the on the front lines. They need to be informed about this research and they need to have a voice.
There, you have my wish list. I hope it can, in some small way, be of help.
Persistent, low-grade fever is a sign of autoimmune illness, which I believe ME/CFS to be.
Nanci – I also have fevers and have for many years. For me they also get worse if I overdo it, which doesn’t even have to be physical, but just plain zonked out too. It happened yesterday when my children, who are visiting me, took me out and I was in a wheelchair. Three hours and they had to bring me home. I love your idea about having some of the great doctors who have been found be a part of this suggestion.
family predisposition to me/cfs. both my daughter and I have come down with cfs, albeit she at a much younger age than me. I believe Dr. Enlander is doing a study on twins at Mount Sinai in New York. He may be a good connection in this arena.
I would want to know what their negative control group will be – normal healthy people? People with immune deficiencies such as HIV? MS? I’d want to know what is different in ME patients compared to other groups of patients whose diagnosis and disease etiology & progression is defined.
And history of allergies/immunodeficiencies
issues &/or places to look that I think are important:
Vegas nerve issues, esp the possibility of a hidden infection in there of some sort
Mitochondria
methylation
Mold and other environmental toxins, esp in those who also have MCS and other sensory sensitivities
gut issues
sleep/circadian rhythm issues
cognitive issues
also re PEM, they need to look more into delayed PEM, too….the two day is a good start but could wind up hurting those who have delayed PEM, esp if any of this stuff winds up affecting disability
so many other things, but those are my top ones
If I had to chose one pathological process to investigate above all: Poor blood flow to the brain. Poor in quantity, poor in oxygen (and instead rich in lactate…)
What are the molecular and metabolic processes that lead our cardio-pulmonary system to fail our brain’s needs.
I’d like to see them document the effects of cognitive exertion. Sometimes it is worse than physical exertion. If they push for emotional exertion they might get some very angry, volatile, and sad subjects, I’d hate to see them confuse that for mental illness. I realize they are killing multiple birds with one stone in this study and economizing research dollars by using the control groups that they are, but I think the Lyme group will likely be very similar to ME, and the other group, well it’s just weird and that weirdness may further stigmatise the ME group.
I don’t know if this happens to everyone but it happens to me: I hardly catch colds anymore but when it do, my ME symptoms get much better. It’s almost as if getting a cold gives an upregulated immune system something to do rather that cause chaos in the body. I would also like to see if stress hormones like cortisol can trigger symptoms.
My son twice, felt better when he got a cold
I caught a virus from my father once that consisted of nothing but a slight hacking cough with a tickle in the back of the throat and my head felt so great that it felt like I was on codeine the entire time I was sick for a week or two. Then when I got better my headache came back like it’s constantly been for over the past decade.
Hi RugbyGoat
I agree with you and have very similar experiences. When I do catch a cold, my CFS symptoms get better too. I recently caught a virus from my grandson, I was sick with that but my CFS symptoms also subsided. And yes, I also feel that stress hormones do very much trigger symptoms.
yes to the phenomenon of feeling better if I ever have the blessing of catching something. have more energy, stamina, etc. yes also to the daily low grade fevers that make me feel worse than a high fever which I haven’t mustered in years.
It seems to me that the main symptom that defines CFS is the PEM that follows exertion. Many of us suffer from a variety of the other associated problems but the exercise intolerance is the one that is unique to CFS. Let’s target that and hopefully all of the other associated ailments can be eventually figured out from there.
Can we work backwards from this key dysfunction? What can cause/trigger this physiological shutdown – a specific cytokine? What causes what all the way back to the initial mechanism(s).
When a healthy person exercises enough, they are stiff and sore to some degree a day or so later. I assume this is a protective mechanism of the body to guard against overexertion damage. I feel this effect 100X more than I did when I was healthy. So is this disease a normal process that has gone out of control for some reason? Many other ailments are the result of the body overreacting: asthma, rheumatoid arthritis, etc. – Autoimmune diseases. Doesn’t the roughly 3 to 1 female to male ratio strongly indicate CFS being autoimmune?
Like anything else, this takes funding and effort. $1,800,000,000. can be found for Zika research seemingly at the drop of a hat. Surely the life-robbing severity of CFS can merit a reasonable amount of research $.
Thanks as always, Cort, for providing a platform for us.
If Govt can spend $1.8B for Zika virus or billions for Ebola or other viruses, why cant NIH fund DRACO or philanthropist fund DRACO that stops RNA replication used by virus and thus perhaps all viruses. Many ME cases may be triggered by viruses to this would eliminate trigger early and be prevention. Once triggered, still ambiguous if some cases have hidden viruses in brain, spinal fluid etc so need to try to stop viruses. Works in mice I think but need to get real funds to fund DRACO. See: http://www.techinsider.io/can-todd-rider-cure-viruses-with-draco-research-2016-1
Greg your suggestion that this disease may a normal process that has gone out of control for some reason strikes me as being very valid. I developed fibromyalgia 25 years ago, rheumatoid arthritis 12 years ago and me/cfs diagnosed 6 years ago. My triggering event for the me/cfs was a nasty fall that resulted in a broken nose, but I think my immune system was seriously out of whack long before. None of my doctors has yet to see the connection between the different illnesses. I’d love to see statistics on how many people who have me/cfs also have another autoimmune disorder.
I’d like to see much more funding for autoimmune diseases in general considering how many people are affected and how devastating they often are.
People with CFS have proposed so many different types of triggering events is why I think it might be more prudent to focus on the main symptom and trying to understand how PEM is produced and then working back to a cause(s).
I like to ask all members on this site, whichever way you think you got the desease,whither it was a car crash, whiplash, infection, stress…etc. ‘so far I am 4 for 4″ l.ol
My question whenever your preceded event did you have chronic insomnia as a symptom? And if yes how many still have it?
Just curious, gentle hugs, Rita
Greg mentioned, “I think it might be more prudent to focus on the main symptom and trying to understand how PEM is produced and then working back to a cause(s).”
In my case cognitive dysfunction/neurocognitive damage (in all of its aspects) is equally disabling as PEM. In my opinion, not exploring brain damage and neurocognitive problems of ME would be an enormous mistake and a great disservice to ME patients.
S.
I don’t wish to see any symptoms left unexplored as they are all devastating to the patients. My line of thought was to first focus on the symptom that is unique to CFS so as to not end up with studies that include people that don’t have CFS. What causes the PEM might possibly also produce many of our other symptoms.
I want to second your list, Cort. Re the vagus nerve infection idea, I suspect that the issues which seem to come from the vagus nerve originate higher up. The brain and nervous system is what I want most closely checked out. To this end, if they could have a “guided tour” of Dr. Jay A. Goldstein’s discoveries and hypotheses, that might be very fruitful.
Thanks for asking!
Inability to do straight walking for very long, or standing in line (aside from POTS issues), and especially stairs or up an incline. Would like answers. Never understood it in all these 30 years. I was never athletic but I walked uphill, downhill, downtown, never felt it pre-M.E.
Sensitivities to light, sound, touch, clothing, and the incessant itching… I would like looked into.
What i would like to see is:
Mycoplasma and gram negative bacteria in blood and stool
Enterovirus testing blood, stool
SFN testing biopsies, OI testing, etc
Vagues nerve infection/brain infection
Test for neurotoxins and endotoxins and where are they coming from
Test LPS
Test seratonin and dopamine
Blood volume/acetocholine testing
Full immunilogical panel cytokine and proinflamatory cytokines panels
Symptoms mapping/subset analysis upon completion
Get input from Dr in other countries Dr KDM (has seen 18,000 people with this. I know of rumors from years back but he is an absolute expert in (ME/CFS)
Bring in all the Big Dogs to fill in the GAPS through review of study content and missing tests: Klimas, Peterson, Lapp, teitlbaum, Kenny De Meirleir, Oaklander, Elander, Holtorf, *byron hyde*, Bateman,
OK Ill stop now.
I would like the NIH to include IgG antibody function tests. But it needs to be among patients that have had ME/CFS for at least 5 years, maybe longer. I think the immune system runs out of juice after fighting chronic infections for many years. I have been sick since a severe Lyme Babaseia infection (encephalitis) in 1990. Almost two years ago a UCSF immunologist ran IgG subgroups on me, they were low but not diagnostic at 530 total (lower normal range 694 at UCSF), but my subclass 1 and 3 were very low. So she ran a vaccine challenge. Which involves looking at antibody protection on 12 or so serotypes. My results indicated that I had about zero antibody protection. Then I was given gave the pneumococcal vaccine and tested again 6, 8 and 12 weeks later. Normally at least 5 of the serotypes improve or move into the normal range. My immune system did nothing I was not able to mount a defense at all. I was put on IVIG and have been able to go back to work full time and be productive. I am not cured but I have a life again. I just have to watch not over exerting. The interesting thing is that two of my friends who have similar Lyme/ME/CFS histories had the same results and are both doing well on IVIG. All different doctors one at CPMC and another at Kaiser. I do not believe this is random chance. It needs to be validated among other long term ME/CFS patients. It may at least treat a subset of patients.
I also have a low immune system in almost every aspect. Igg very low and iga very low as well. I also get IGIV. I have Fibromyalia (mild). It didn’t start with a virus to my knowledge.
Ruth
I would like them to look into abnormalities found on QEEG’s. A neurophysiologist found that my brain was 90% impaired with slow wave activity that should not be there. She called it a metabolic encephalopathy. This is a common finding that she sees in ME/CFS patients that she treats. I believe the Zinn’s and Stanford have begun doing research with QEEG’s. I believe this is a promising area to explore to document physical dysfunction going on in the brain.
I’d go along with your list, Cort, as the priorities. 3 things I’d like to add – sleep studies to identify how often rectifiable problems like sleep apnoea are being missed, vitamin D testing and a look at magnesium levels as they have been found to be deficient in the past. I’d like them to talk to Dr Gominak http://drgominak.com/vitamin-d-hormone.html
I like the 2 day exercise test, if done correctly! And the spinal tab. Maybe they can find out what causes the neuroinflamation of the Japanese study.
Japan calls this low natural killer cell disease so this is one of better biomarkers and must be tested. Recent article from Scandinavia also looked at this: http://onlinelibrary.wiley.com/doi/10.1111/sji.12388/full
Exhaled breath should be analyzed for NO, nitric oxide, since Cytokines storm or mitochondrial disorders can lead to high NO, NO can dilate blood vessels, and perhaps contribute thereby to POTS. Cheap test, $10 using Niox Vero handheld instrument or others. FDA approved test for airway inflammation, so need to be aware NO goes high also for Asthma: http://www.niox.com
Other exhaled breath methods useful for lung and breast cancers could be considered at a latter date (www.menssanaresearch.com). Exhaled breath tests are non-invasive.
QEEG by Marcie and Mark Zinn or perhaps others needs investigation, as mentioned by others above. http://www.meaction.net/2016/02/07/case-study-brain-fog-in-cfs-can-be-seen-in-qeegloreta-analysis/
Jason Leonard is collaborating with them at DePaul Univ.
Some Autism might be cause by biome, glutamate etc and good TED talk on topic. Does glutamate elimination help, both MSG and other foods the form glutamate.
Lactate, acetate, possible other organic acids, formate, glycolate could be tracked.
Does HBOT, hyperbaric oxygen treatment help. Study done in Turkey w 16 CFS patients was preliminary, but positive.
Correction, the recent 2015 Natural killer cell was in Scandanavian Journal, but work was done in Australia, so need to give credit to down under, where some great research is happening. We need more great extramural NIH funding by NIH also in US, so RFA’s for M.E. are needed, not just internal studies. NIH need to fund Ron Davis, Ian Lipkin, Jason Leonard, the Zinns, and MANY other interested research groups in US and abroad. NIH should ramp up to $250 M/year to make up for years of gross neglect. M.E. is 1000X more common in US than Ebola, Zika etc and need major response for 2 million with ME/CFS in US
The HBOT = Hyperbaric Oxygen treatment, 15 sessions in 3 weeks at >2 atm for 16 patients gave promising preliminary results:
https://www.researchgate.net/publication/236917002_The_efficacy_of_hyperbaric_oxygen_therapy_in_the_management_of_chronic_fatigue_syndrome
Pure O2 at 1 atm would be cheaper and easier. Has this ever been tried? Could shift Redox potential, possibly pH or other chemistries.
Muscle Function? Mitochondria. Talk to Dr Sarah Myhill in the UK.
Thank you so much Corton.
Cort!
🙂
That gave me a good laugh!
Fitbits and similar can track heart rate and others perhaps O2. Can this be databased for whole year or longer to assess real-time variability of HR etc and trends over time. My son w severe ME, bed-bound cannot talk or chew, sometimes has 120 beats per minute pulse doing nothing, and other times 80. Trending with EEG and qEEG etc longterm or similar would also be useful vs spot checks in a rare to never doctor visit for severe ME patients. NIH requires patients to see MD, vs luckily OpenMedicineFoundation.org is studying 20 severe patients who are bedbound and two ill to travel. Thus, the studies are somewhat complementary. Note ME/CFS is Bethesda MD might be different strains vs San Francisco Bay area being studied by End-MECFS.org
My onset was after documented Mono and Severe Strep Throat. I met all the ME/CFS criteria since then in 1983 (long before the internet or the name CFS) when I was 17. Another blow came after Adult Chicken Pox in 1990. I have had positive allergy tests to different dust mixtures, molds, candida, grass pollens, tree pollens, weed pollens, dander from various animals, and several foods; dairy being one of them. A lot of my reactions are delayed. I also have many intolerances and I have tested positive for Hypoglycemia on a glucose tolerance test. I am sensitive to odors and chemicals (from flowers, to scented products, to glues, to formaldehyde, to plastics, to gas fumes, etc.) and avoid them as much as possible. I have a Mitral Valve Prolapse. I am bedridden and struggle terribly with Migraines. The only time I’ve left my home in a decade was to go to the hospital by ambulance because I thought I was having a heart attack and I couldn’t breathe. And honestly, it was only the desperation of not being able to breathe that was the impetus that made me go. I had to fight in the ambulance because I couldn’t lay down without being worse and they didn’t want me sitting up. I had to question them about everything and fight to get some boundaries back because they just took me over. I had to fight to get them to do an echocardiogram. They diagnosed me with Pericarditis. They also said that I could inhale but that my lung muscles weren’t allowing me to fully exhale. For this, they gave me a half full inhaler to take home; which was nothing compared to what they used on me in the hospital. They told me to follow up with my doctor in the next couple days for a prescription for an inhaler; which I was, and have been, totally unable to do. I don’t even have a doctor anymore. I had to fight with ambulance and medical personnel over several things, they wouldn’t let me eat or drink or take anything, they wouldn’t give me an IV, I went into a migraine hell for weeks, crashed terribly, developed new symptoms and the whole ordeal escalated my disease. With no medical care, it took me years to figure out which breathing techniques help some. 4-7-8 is the best for me. Tiny, tiny crumbs of the methylation protocol every several days (which is all I can tolerate) and iodine also help my breathing some. Compression clothing helps too.
– We need to have the COMPASSIONATE, PATIENT EDUCATED SPECIALISTS already involved in this disease FUNDED and CONSULTED!!!
-FUND RON DAVIS!!! SAVE WHITNEY!!! SAVE ALL OF US!!! (How many lives have and will be saved by the research, innovation and invention of Ron Davis? How can they let his son die?)
-3 DECADES of NEGLECT and GENOCIDE is INHUMANE, IMMORAL and a NATIONAL EMBARRASSMENT!!!
– We need FUNDING, FUNDING, FUNDING, FUNDING, FUNDING, and a MASSIVE INFLUX of NEW (personality disorder-less!) RESEARCHERS and IDEAS.
– SEVERE PATIENTS DESPERATELY need to be STUDIED.
I cannot EMPHASIZE this enough!!!
Along with what’s been said:
– I’m interested in cardiology being much more involved in this disease. Peckerman’s work and the things that Cheney has said about the heart over the years greatly concern me. How is this disease affecting our hearts?
-I’d like to see migraine and headache specialists involved in this from various perspectives – blood flows, oxygen, neurology, immunology, gastrointestinal, sleep, etc. What are these migraines doing to our brains?
– I’d like to see research into our allergies, delayed allergies and intolerances, and I’m tired of the stigmatization around these symptoms.
They said we would get more funding. They said they’d tell us in January. It’s the middle of February. I want to know what they are spending on us. They need to be held accountable to their promises.
Thank you so much Cort for giving us a voice and all that you do for us. Thank you to this community. Isolation is extremely difficult for me. I’ll pay for writing this and I can only somewhat comprehend it in fragments; spinning in my head. It will spin and haunt me for days.
I agree – great point – severe ME patients must be studied. I think most, if not all of us, want Ron Davis’s research to be funded. I literally think about his work every day; that’s where most of my hope lies (less so with NIH, to be honest).
Ron is very focused…..he has a great crew around him and he has the Grand Plan! If he had the money I would put it all on him…
Me too – my money is on Ron Davis!!!!!!!!!
I can’t remember the name of the Professor who studies the ratio of glutathione to reduced glutathione GSH/GSGG, however, he found it common in both CFS and Autism and could be key as it reduces our ability to remove toxins.
Good idea….I think a couple of people have including Shungu in the brain no less.
I don’t think the CDC’s complement C4a findings have been followed up on enough, and some of their other findings from when Suzanne Vernon was running the lab such as calcium ion channel stuff. Also contact Ron Davis, David Patrick in Canada, Julia Newton in England about her acidosis work and Fluge/Mella in Norway to see if they have preliminary data they could share.
I’d like to see traditional MRI instead of fMRI, SPECT and/or PET scans pre- and post-exercise to examine blood flow to the brain and diurnal cortisol readings.
Cort, you should contact David Patrick and see if he can send you a recording of the Grand Rounds he gave in January, it was pretty heavy duty. He discussed specific antibody patterns they were finding and other embargoed preliminary information-
https://www.facebook.com/events/1527115044266703/
Thanks John – didn’t know he did that:)
A few more. Test for small fiber neuropathy via skin biopsy, QSART, corneal confocal microscopy. Given the autonomic symptoms and the fact that SFN occurs in POTS and Fibro which often overlap or co-exist with ME/CFS, it seems logical to look for it here too. Add gastric emptying studies to autonomic testing. Upright transcranial doppler/ brain blood flow studies. Test for adrenergic antibodies (could consult Dr’s Kem and Raj). Screen for joint hypermobility (Dr. Rowe EDS/ME/CFS connection). Vestibular testing. QEEG based on recent new findings. MRI looking at dorsal root ganglion (DRG protocol?). Mitochondrial buccal swab testing. Whole exome sequencing. Get input from Dr. Julian Stewart and Marvin Meadows who study ME/CFS POTS.
Mention of ‘skin biopsy’ reminded me… we really need various biopsies, whether skin or muscle biopsy or some other. I have always thought a muscle biopsy would give clues. I’m sure skin biopsy would too. I’m going in for a lymph gland growth biopsy this week, only after 30 years of M.E. and 8 years of having the growth.
Histamine levels before, during, right after exertion, hours after exertion, and the next day. Is there any way to realistically test histamine levels in the central nervous system as well?
Great list, Cort. Here are my two cents:
Chart the reactions to the exercise test over months. I was literally unable to speak the day after the second day of CPET testing. I had a recurrence of mononucleosis (37 years after the initial infection) after undergoing the two-day CPET test and, more than a year later, I still have not recovered. I was forced to do the two-day CPET test because my LTD disability company denied my claim and I had to mount a $50,000 legal appeal to fight (I won, but it has nearly cost me my life).
This is critically important, in my view: Talk with Sheila Bastien, Ph.D. in Berkeley, California, and perform neuropsychological testing and analysis to Dr. Bastien’s specifications over two consecutive days. Preferably perform this testing after the exercise tests. Ideally Dr. Bastien and her assistant would perform this testing and analysis; is there anyone else in the United States who knows more about neuropsychological testing of ME patients?
Talk with Andreas Kogelnik, M.D. and David L. Kaufman, M.D. at the Open Medicine Clinic in Mountain View, California about the different tests they have their patients do. Also look at possible Bartonella infections (Galaxy diagnostics), Mast cell activation syndrome (MCAS), MTHFR mutations and methylation
I agree that sleep studies must be done and any explorations of circadian rhythm could be useful as well.
Is anyone looking at leptin?
Study food intolerances.
Study “hidden” gut infections with comprehensive PCR stool testing.
Anything that will help us qualify for disability insurance when warranted without harming our health (specifically, the risks of the CPET test) or driving us into bankruptcy in order to pay for testing.
Study the role of hormones in both sexes.
Study vagus nerve issues.
Study the effects of mold and environmental toxins.
I think certain vitamin levels should be looked into. I have had fibro/m.e. for 10 years…now have low b12 which….my body has trouble metabolizing it and im getting injections monthly. I have heard this is common in long term m.e./fibro…..also constant low vitamin d….always on d3 and d2 i feel like the d3 id better, but only recent that i was put on it….plus my pottasium always low. when i first got sick, january 16,2006…when my whole life changed in one day aftet a horrible flu (botj resperitory and gastrointrdtonal …i haf a scary thinh happen…felt like heatt attack or stroke…went to e.r.hospital ….they thoughy might be pulmonary embolism….the only thing they found was dangerously low potasium and saline…plus pluerosy. Also bet other minerals might be poorly absorbed ie: magnessium/iron etc. I now get horriblr migraines also….ice pick one i thought would kill me….electric shock migraine (always in thunder storms)& i think partial siezure….think there is something almost likened to epilepsy….electric…..and i bet studying the skin nerves more would be revealing.
I agree with the need to check for both low levels of certain nutrients as well as an increased need (beyond the needs of controls) for certain nutrients. I have been able to improve my energy levels a bit with IVs of Myers Cocktail solution once a week and B-12 injections, as well as a supplemental blend of cleanly sourced micronized vitamins and minerals intended for brain and nerve health. I’ve also increased my D-3 intake and DHEA intake. None of these has been a cure, but all have noticeably helped both energy and cognition. Bioidentical hormones are also integral in my treatment regimen as well. Specifically, I take T3 for thyroid, progesterone 4.5% cream, and .05 estradiol. All help me with sleep, mood, and energy both directly and indirectly.
I was on biodentical hormones also, I loved it especially the testestestrone it really made me feel stronger as I am depleted in it. Unfortunately I am not able to afford it each month and medical doesn’t cover it?
Vitamin D has been deficient since 2005 or earlier, I have been given quarterly high dose shots of vitamin D, along with 10,000 mg supplementation, and my vitamin D only went up 6 points? It wAs 17 to begin with.. I just wonder because all the costs of all these vitamins is so expensive is there a brand that is more absorbable and multi? Like electrolytes I am defiecent in a few instead of buying 4 or 5 different ones do you or anyone know of a quality absorbable multi formula?
Thank you for listening to my ramblings, l.ol enjoy yr day, Rita
In another section Chris posted this:
chr8585@gmail.com
65.161.47.235
Submitted on 2016/02/12 at 6:13 pm
i would like to see individual differences addressed rather than just trying to find one solution for all: For instance thyroid is something i have yet to get right (see book “stop the thyroid madness” and T3 slow release for people, like me, who have chronic low body temperature (Wilson’s syndrome?)
http://www.wilsonssyndrome.com/emanual/
http://www.wilsonssyndrome.com/emanual/chapters/t3-therapy-in-hypothyroid-patients-euthyroid-patients-presenting-on-t4-containing-medicine/
Chris makes a good point (Cort, do you want to hide the email address?) A positive outcome to thyroid replacement has eluded me too. I’ve never been able to be on a steady dose of thyroid replacement hormones in 27 years since first being diagnosed with autoimmune thyroid disease and not for a lack of trying every conceivable option and dosage strategy.
To add to the good suggestions above: Please investigate erythromelalgia (red limb pain) because, added to small fibre neuropathy, it makes me very sensitive to warm conditions. Swollen red feet and ankles seem impossible for others to miss. I’m always being asked about them. The worst thing is the stinging, burning pain that goes with it.
Also, why are we so sensitive to temperature changes? Anything above 23 degrees celsius and I’m unable to function. Anything below 20 and cold limbs will be in pain.
I feel the study of particular ion channelopathy is connected to this. See the work of National Centre for Neuroimmunology and Emerging Diseases at Griffith University for this.
Well here is the list, in jury’s to neck the back of my neck was swollen bigger than a cereal bowl for months, birth defects that can become painful therefor blamed on fibromyalgia.severe pain left to chronic fatigue
Marie Charollte tooth – caused severe calf and foot pain, back attributed to fibro, but pain went away with surgery, same with back fused Vertabrae, CMV, EBV, And Mono….follow up Mri’s that say possible Ankling Sponditious, pineal Cysts, mastoiditis cell signal progressing following year even when treated. Lymphoid tissue, with chronic allergys, post nasal drip constantly, strep throat, ear infections, swollen lymph nodes,pharyngitis trouble swallowing and choking because of lump in throat. Bacteria infections/Viral scans, many low pituitary hormone deficiencys, Adrenal areas, headaches, double vision, when I crash so do many of my electrolytes, especially potassium, vita D with suppletation,stayed low for over 11 years,Bun, creatine, magnesium, but I want to know most is the high Cortisol I’ve had severe anxiety since a teen, I can see why it would break down my body, also the gut many infections, and am I processing vitamin, and minerals correctly. My 2 brothers were born with birth defects one had mentigitious and almost died and the other cleft lip ,why don’t the do functioning medicine to see what’s going on with and low cost or covered genetic testing? Something new Please, Rita
Lynne , I had the Red, Swollen angry ankles also until I saw a foot doctor and was diagnosed with Marie Charlotte tooth desease basically a inherited high arch that can cause severe complications. Rita
Rita, that’s two of us..I never even heard of CMT but was so relieved from pain going up my legs into lumber it can also effect our arms which is why I have the “drop it syndrome” I give up on handling anything breakable or messy like dinner, and your right I used to get red swollen angry looking feet with viens popping out of my skin, and restless painful ankle pain. Sorta like I imagine restless legs syndrome is like.
I find whenever I feel it now it’s my Potassium low level. Rita
Thank you for mentioning erythromelalgia, Lynne. I have been suffering episodes of this and none of my docs knew what it is. I’m glad to at least have the symptom identified with your help :). Have you had blood volume tests done? Is there any treatment you’ve tried that you found helpful for it?
Cort, I think mitochondrial problems, documenting low blood volume and muscle weakness problems need much attention. The term PEM needs to change as it is harmful– “malaise” is not what is going on–it is much more severe “Debilitation” caused by the low VO2Max and a lack of oxygen. There is a HUGE need for a “pamphlet or handout of some kind” that we patients can hand out to family, friends and doctors to help educate them on the what the disease even is as well as explain the true severity of our illness so we can at least get support and understanding we deserve and desperately need without being judged incorrectly simply because we “look normal on the outside”. The pamphlet needs to explain how crucial it is that we ration energy to prevent “crashes” that worsen our illness and about the huge variations we experience hourly and within a day so family gets why we seem “OK to them” at 2:00 and then feeling like we cannot get out of bed 2 hours later. I have asked Stanford CFIDS specialist for this and am told they hear that from every patient but all they can offer is for patients to bring family to your appointment and they can explain it to them.
Hi cort,
I think if we could work out why people can’t tolerate alcohol or medicines it would lead to perhaps a mechanism . It’s like we have a sub acute hepatitis. The alcohol sensitivity as far as I know doesn’t occur in other illnesses. It’s either the brain causing it or the liver ?
I agree Jill – glad you mentioned that. That is like a big red flag telling us something….
There is so much good stuff already suggested here.
But I would really like to understand why Dr.Joseph Brewer’s treatment protocol helps so many ME/CFS patients.
So I would like the NIH to do a saline wash or a swab of the sinuses and try to figure out what is growing in them.
Dr. Brewer thinks it is some kinds of mycotoxin-producing fungi that are living in a biofilm. So it is not an infection of the body, just a hitchhiker we need to evict.
And I’d like them to talk to Dr. Brewer, of course.
Most of the things I’d like to see are already mentioned – the two-day exercise test, sleep study, full mitochondrial profiling.
I’d also like to see this study replicated on a large number of people – https://sciforschenonline.org/journals/neurology/JNNB-1-112.php It looks promising but n=1 is only preliminary research.
Checking overlaps with other known syndroms such as Ehlers-Danlos Syndrome, POTS and other forms of dysautonomia (gastroparesis, etc.) would also be interesting.
For the blood tests they should check amino acids and pregnenolone (and the hormones that are produced from it such as DHEA and testosterone (including free testosterone, not just the total)). My amino acids, despite a high protein diet, were almost all below normal and taking supplemental ones helped me to keep from losing any more weight (I was already quite underweight) and stabilized my ME/CFS. They should also do 24hr cortisol in addition the blood and salivia testing to get a better picture.
It would also be nice if they would look at chemical, sound and light sensitivity in ME/CFS patients. I’m not sure if there are any standardized tests but even a questionnaire would probably make them stand out compared to controls and provide some validation for the suffering that these sensitivities cause.
Good idea James, seeing as I am dealing with low hypopituitary hormones, Adrenal hormones, and low electrolytes, among other things, I think your on to something but I would also like genetic test for my high serum iron and ts% past viral, and bacterial infections, as I know I have had many of both. : )
Thanks for doing this Cort.
A study of mitochondrial function especially after the exercise test should be essential. I’ve seen Ron Davis comment on the importance of mitochondria.
Take into account the Peckerman study of low cardiac output. http://www.ncbi.nlm.nih.gov/pubmed/12920435
I’ve had an echocardiograph from which low blood volume was ‘inferred.
Talk to Dr Sarah Myhill who has a lot say about mitochondira and heart function. http://drmyhill.co.uk/wiki/CFS_-_The_Central_Cause:_Mitochondrial_Failure
Julia Newton about all the above. John Chia re Coxsackie virus in the stomach.
I agree with all the above re vagus nerve, etc. Tell them about Sophia Mirza and her pm finding dorsal root ganglioninits.
They could profitably read Myalgic Encephalomyelitis and postviral fatigue states by A. Melvin Ramsay 1986(in spite of the pvf in the title which he didn’t want)
Take into account daily variations which can confound measures:Variability of postural orthostatic tachycardia in patients with myalgic encephalomyelitis and orthostatic intolerance
http://link.springer.com/article/10.1007%2Fs00380-015-0744-3
There is plenty to keep them busy!
the old Peckerman Study – haven’t seen that mentioned in awhile 🙂
There are three main things that I’d be interested in:
1. Analysis of variables of instigating illnesses or events against symptom types to determine whether subgroups have common common roots. And whether different instigating factors would then require different forms of treatment.
2. Cardio-vascular studies – orthostatic intolerance with inverted blood pressure responses (e.g Rising diastolic with dropping systolic); abnormal relaxation of the left ventrical and whether study of this can give insight into the type of fatigue experienced in other muscle groups during and after exercise/exertion.
3. Autonomic dysfunction and vagus nerve involvement – is there a link with herpes family viruses (in my case Epstein bar), and is there a way to determine whether symptoms correlate with activation/reactivation of the virus. Subsequently, is there some way to test for this and treat it?
I think the NIH should initially concentrate on identifying biomarkers for at least one subset of patients. It is widely believed that ME/CFS likely encompasses several different diseases. We need to start somewhere and the best way to start is to use a strict case definition that selects patients with greater illness severity. As more biomarkers are identified the research should expand to less severly ill patients and broader case definitions.
I don’t see the point of including a healthy post-lyme group, or a group with functional movement disorders in a study on ME/CFS. I believe the money is better spent on including more patients to ensure statistical significance of any findings.
Over the years, a number of potential biomarkers have been proposed. I would like the NIH to attempt replicating these.
I believe that a Rituximab trial modeled after the current Rituximab trial in Norway would be an excellent idea.
I agree with A.B. (well said!):
“…the best way to start is to use a strict case definition that selects patients with greater illness severity. As more biomarkers are identified the research should expand to less severely ill patients and broader case definitions.”
…and…
“I don’t see the point of including a healthy post-lyme group, or a group with functional movement disorders in a study on ME/CFS. I believe the money is better spent on including more patients to ensure statistical significance of any findings.”
…and…
“I believe that a Rituximab trial modeled after the current Rituximab trial in Norway would be an excellent idea.”
Great project, thanks for your efforts Cort! Many good suggestions. Here’s a new one:
Cortical Metrics
https://www.corticalmetrics.com/
http://www.brain-gauge.com
Cheap, easy and scientific.
Uses multi-site vibrotactile stimulation and (sophisticated) computer processed sensory testing to measure various brain functions (as opposed to old manual sensory testing that can only be used to test for peripheral nerve function).
Relatively new and used in research studies to measure cognitive impairment and cognitive changes in various pathologies like traumatic brain injury, dementia, autism or even migraine. Improvement in brain function can be tracked and in the future different diseases might be distinguished or even diagnosed (for TBI that seems to be in the near future). So far it is only used in research studies but if it turns out useful for ME/CFS it would be cheap and easy to implement in a doctor’s office.
The website links to the scientific research (36 publifications with this product and a lot more with similar technologies).
Here’s one paper on this technology and product:
Neurosensory assessments of migraine (2013)
http://www.ncbi.nlm.nih.gov/pubmed/23298830
https://downloads.corticalmetrics.com/pub/nguyen_neurosensory_2013.pdf
The research aims to define objective, quantitative biological measurements for diagnosis and assessment of treatment efficacy — the stuff that dreams are made of!
The website states ‘corticalmetrics are currently being used to investigate mental fatigue in a number of ongoing studies’. Anyway, I don’t think they got any research on ME/CFS yet. Would love to see some exploratory preliminary pilot study. Sry for long comment
What an amazing amount of information here. Cort, brilliant idea. I’ve been taking some notes for myself, but I have always been interested to find out if a bad case of histoplasmosis I had in 1982 had anything to do with my ME/CFS because I was never the same after that. I also suffered from chronic sinus infections and had five surgeries at the Mayo Clinic. I “wore out” all antibiotics and am now resistant. I am allergic to some, including OTC creams. Low body temp, fevers, IBS, prolapsed mitral valve, peeling skin on face, black mold exposure with sickness, low blood sugar, low blood pressure, complete cold intolerance and some heat intolerance, migraines, seronegative RA. I wonder about floroquinolines because I took Cipro for years, DDD, severe leg pain since childhood. These are the things I wonder about because they are my symptoms. Cort, I’d love to help with this if possible.
Cort,
How would we find out about the possibility of being a participant in the study?
Interesting thought experiment, Cort. OK the NIH study kind of sucks, but if we’re so smart what would we do differently? Do you ignore the past and go on an exploratory deep dive, or do you try to replicate the most important findings from past research? Or a bit of both?
It would take several weeks to think about this in depth, but off the cuff here is some of what I would include:
Inclusion criteria: ME-ICC + Jason operationalized ME criteria + sudden infectious onset
Exclusion criteria: Insidious onset, diagnosis of Lyme borreliosis or PTLDS.
Blood tests: Full endocrine panel. Serology testing for coxsackievirus B + echovirus, HHV 1-7, parvovirus B19, community derived + vector borne bacteria. 51-plex cytokine assay (reproduce Columbia study). Proteomic/metabolomic assay. IgG subsets. Reflex autoimmune panel.
Imaging: PET with PK-11195 marker, MRI (reproduce Nakatomi + 2011 Australian MRI study), qEEG.
CSF tests: 51-plex cytokine assay (reproduce Columbia study), oligoclonal band test, proteomic/metabolomic assay.
Other tests: Full autonomic workup (head up tilt + plasma norepinephrine determination, QSART, etc), ambulatory heart monitoring, activity monitoring. Muscle and stomach biopsies (reproduce Chia enterovirus study + Newton and others muscle studies).
Control arms: age and sex matched healthies, age and sex matched sedentaries.
Gut dysbiosis, leaky gut and especially histamine intolerance can all result in many of the issues experienced by ME/CFS sufferers. Too much histamine results in vertigo, migraines, fatigue, eye inflammation, general inflammation, mood swings, anxiety, poor sleep quality, brain fog etc etc. The list is surprising and extensive (google ‘low histamine chef symptoms’).
Another overlooked and important thing is the alignment of the neck/cranial bones. I recently had neurocranial reconstruction (that I first read about on this website – thanks Cort) where my sphenoid bone was realigned. My energy levels increased dramatically and body pain and TMD reduced. It made an incredible difference to my health and I feel almost normal again for the first time in years.
Gut health/microbiome and spinal/cranial alignment would be my top two issues for investigation.
As a ME/CFS person I agree that the infections mentioned above should all be investigated – the EBV and HHV-6, m. Pneumoniae all apply to me. One that I haven’t seen mentioned is Parvovirus B-19, otherwise known as children’s 5th Disease. Mild in kids, like chicken pox, it really packs a wallop for adults. I had it 5 years before I became ill with ME/CFS. For six months I had a mini ME/CFS experience, but then began to recover. I then was able to attend graduate school and work full time, until I became ill again with what we think was EBV with no mono. I was never the same thereafter.
After some more thought, I’d also like to see more research in how our bodies remove lactic acid from our muscles (or don’t). This rings true for me in the heaviness and lethargy that I feel after mild physical activity. Could excess lactic acid somehow affect our cognition as well? It seems that when I’m feeling the effects of too much physical activity, my cognition suffers as well.
Cort, please ask if they can look into the saver sound and light sensitivities experienced by many. As well as chemical sensitivities.
Cort,
Are they going to be looking at dopamine, seratonin and other brain chemicals?
Has anyone looked at CFS from the perspective of other hormones? estrogen? testosterone? DHEA?
Also what about central nervous system stimulators? Are any of them safe? They do seem to help
Again….THANK YOU!!
I will put those down…:)
Testerone and dopamine have shown up….Some people do quite well on CNS stimulators. I think they’re worth a try. The Synergy trial paired on with supplements – a great idea. 🙂
Cort: Is there still time to post comments here, for you to submit them to the clinical study at NIH?
Let us know.
My wife now lives with and is severely disabled by ME/CFS over these past 25 years (diagnosed by M.D.). She wishes to submit comments re remarkable, prior incidence of severe, disabling polio among mothers, whose children subsequently developed and were diagnosed with ME/CFS. As an example, my wife’s mother had polio in her teens. My wife came down with (and still has) acute infectious-onset ME/CFS when she was 43 years old.
Furthermore, some years ago, my wife and I attended a regional meeting re ME/CFS. Six women including my wife were in attendance at that meeting. In casual conversation, these women were stunned to learn that each of their mothers, at a young age, had polio before giving birth; and, now all six of these women had been medically-diagnosed to have ME/CFS.
This is more than coincidence.
My wife’s personal opinion, after many years of severe symptoms and impairments, is that this disease is caused by a mutation of polio in combination with older, mutated viruses, as a hybrid form.
It is time to wake up and take action.
The entire gut biome — its genetic and epigenetic factors, gene expression and/or suppression —
and the complex interactions among all enteroviruses with the vast populations of gut flora — must be given thorough study.
These correlations of polio, post-polio syndrome, and ME/CFS must be investigated, with high-priority and urgency.
yes it is…I plan to start working on it today.
I seem to recall years ago that one theory on CFS was that the polio vaccines played a role in it. I know I and my generation was vacinated.
please, think also on the bedridden patients, those who even can not do an exercise test to relapse. And not only on the ones who got ill with an infection.
Do you know if it’s possible to be in on the study? If possible how would I go about it?
Maybe I am much to late but I was to ill.
I have thought about a lot of things.
1 dokter took my ankle-branchial index for peripheral artery desease screening and he said I had such a bad blood flow that I was unable to stand on my leggs.
1 docter said I had neurogenetic claudicatio.
I had 2 Spect scans over a longer period, I am more than 22 years ill and in first I had only in 1 part of my brain less perfusion, later in more parts off my brain
diagnosed sleeping disorder, sleep went worse over time, sleep is worse when I try do do a little bit, day night rithme changes
temporary lung diffusion disturbances of unknown etiology
sometimes sputum when doing a little bit
they tested me during the day (neurologic)and said it looked like I would fall asleep inbetween, so also sleepmonitoring during the day
they took a spinal fluid sample for exclusion of MS, I have no MS but but found a sample with verry few cells, cytolyse?
MRI brain:lineair hightend signal left occipital without clear explenation
EEG disturbance: free polyrythmic base activity, containing to many fast and slow elements with also moderate irratibility,mainly at the left hemisfere. Diffused increasedirritability during hyperventilation. findings could be comparible with metabolic, toxic, encefalopathie
vision disturbances
bloodpressure drops
I have many cognitive problems like : can not judge distances, forgetfull,black outs, tiredness in head and eyes, poor problem solving behavior(this one was tested), my had get worse when I must think, or with doing a little bit
Th1to Th2 shift
I have a list of complaints where I could fill in 2 papers long that I got during the long duration of my illness
contact docters and researchers who are working and familiar with ME/CFS like Dr Chia (stomach virus) researchers Light, researcher Newton (England on muscle abnormalities), docter Komaroff, Docter Bateman,scientist Suzane Vernon, researcher Broderick (proteome study),etc, work international, make 1 large biobank
look for all the hormones, do stimulationtests, look for all the neurotransmitters, make sub groups females and males
look for small and large fiber neuropathie
look for hart rate variability
look for immune- auto-immune – immunedysregularisation
look for brain infection or auto-immunity, research the brain and the spinal fluid in every way that can
think that post exertional malaise can be delayed for example for a week
think about the study with to much lactate in the brain
take the verry ill first
look for blood volume
why can I not tolerate anti depressants, I get burning sensation in upper respiratory tract, swollen glands, painfull ears or tachycardia, etc
look for slow stomach gastric emptying because I hear that a lot
why get I worse when I take antibiotics?
I am so sorry for all you are going through. It’s amazing that with all you are dealing with you were able to make such a thoughtful list of questions for the study. Thank you
You’ve had a rough time Brigette! Thanks for the suggestions. I think this study is really going to find something. Hang in there!
Dr William Weir of Harley Street, London, has told me that CD8 white blood cells show significant abnormalities in ME patients. I wonder if the NIH study could investigate these as part of their blood tests.
if it is meant for me Prashanti, it is in a long, long time ago that I had such a nice compliment. I did days and days over it and was not positive about what I wrote because I forgot so much. Take good care of yourself!
It was meant for you
And I second it!
Please confer with Dr. Daniel Peterson of Simmaron Research in Nevada. He has devoted his life to finding a cure for CFS. I feel his research could be a great contribution.
I have been ill with CFS since1986. My son, since 1995. Also, please continue to inform physicians about our illness.
What I don’t want in the NIH study – Brian Walitt, lead clinical investigator.
NIH lead clinical investigator thinks CFS and fibro are somatoform
http://www.meaction.net/2016/02/20/nih-lead-clinical-investigator-thinks-cfs-is-psychosomatic/
Please could you arrange, or encourage, a trial on low-dose naltrexone for treatment of fibromyalgia (and auto -immune diseases). I want it (LDN) to be available for everyone who could benefit from it, and would like to know how we can educate on its use, and raise its profile. After extensive and persistent research I have at last been able to access, and take, LDN myself, for my fibromyalgia. After only five days I have noticed an improvement, at low cost, and with only minor and transient side effects. (I had an open mind, so do not think it is the ‘placebo’ effect). A large majority of online reports appear to support its significant efficacy and acceptability, particularly when compared with traditional medication which is often very expensive, and often coming with unpleasant side effects. I feel so sorry for all the suffering people who do not have the opportunity to try this drug which might help them. Can you help please? Thank you for reading this.
One will begin I believe in both ME/CFS and FM at Dr. Younger’s lab.
What about testing for SAMe as a treatment? It works wonders for me. However, I can not
Hello,
what is SAMe and what does it do for you? I am 99% off the time bedridden. Maybe I can get some help from it.
but I must say I have on my own allready digestive problems.
What about testing for SAMe as a treatment? It works wonders for me. However, I can not take it orally. It gives me digestive problems. I understand there are injections available somewhere.
With all due respect, I think sending in a list of over one hundred random scattershot suggestions is precisely the kind of thing we don’t want to do- we need to be respectful of the researchers time. It seems like getting a task force of ME/CFS clinicians, researchers and patient advocates together to compile a ‘greatest hits’ of the most promising findings from recent/previous studies would be much more productive than sending a list of anything and everything under the sun that the NIH could possibly look for. Seriously, if the following list actually was sent then I am highly embarrassed due to how unprofessional and disorganized it makes us look- that list is a good starting point, not a finished effort.
http://www.cortjohnson.org/forums/resources/community-report-me-cfs-patients-on-advice-for-the-nih-clinical-center-study.312/
I’m sorry Cort, it was wrong of me to say that I was embarrassed by that list because I didn’t offer any help in compiling it. I do think though that consideration needs to be given in regards to the researchers’ time as they are busy with a lot of other things besides this one study.
This was something that occurred to me earlier today in regards to another list of questions being compiled to ask the NIH- thought needs to be given about what the main points are and what can be trusted. For instance with the other list there was a question about how exactly patients are to be chosen, with detailed explanation requested. But to me, since the patients are coming from ME/CFS expert clinician practices this question could have been left to a later date because if the clinicians involved don’t know how to diagnose ME/CFS then who does?
I know there is a major question mark about the Empirical definition being referred to but I don’t see how the clinicians would either all of the sudden forget how to diagnose patients or to include patients against their better judgement.
Sorry again Cort and thanks for all that you do, the community is truly a better place for your involvement and efforts.