Roundtable
The Centers for Disease Control (CDC) flew in about 40 people from over two dozen organizations for the one-day CDC Roundtable on Medical Education and ME/CFS. It was a busy 24 hours. Everyone flew in the night before to a hotel near the airport, spent the next day working at the hotel, and then flew out that night.
Dr. Klimas, Dr Bateman, Dr. Montoya, Todd Davenport, and Lily Chu were among the medical professionals attending. Sadie Whittaker represented the SMCI. Vicky Whittemore was there from the NIH. Mary Dimmock, Ken Friedman, Terri Wilder, Charmian Proskauer and Wilhelmina Jenkins represented various advocacy organizations.
Vicky Whittemore, Todd Davenport and a table strewn with papers. To the left of Vicky facing away is Dr. Montoya
It was particularly good to see WebMD and Medscape – which was shooting an ME/CFS education video the next day with Dr. Klimas, Dr. Bateman and others – at the meeting as well as a few professional organizations (American Academy of Family Physicians, American Academy of Pediatrics, American Nurses Association, Georgia Chapter of The American Academy of Pediatrics, Kansas Department of Health and Environment). Many more professional organizations could have been represented – Dr. Unger said they were invited – but they declined.
The Roundtable was part of a continuing outreach effort by the CDC to bring in stakeholders in ME/CFS (doctors, health care professionals and patients) to improve how they communicate about chronic fatigue syndrome (ME/CFS) to the public. Two years ago a similar group met.
The CDC was looking for input on draft materials on how to educate physicians about ME/CFS and how to help prepare ME/CFS patients to meet with physicians and get their story heard.
I was lucky enough to sit at a table with Dr. Klimas, Todd Davenport of Workwell, Vicky Whittemore of the NIH, a CDC rep (who constantly critiqued her organization’s materials :)) and a CDC facilitator.
Everything was on the table – content, formatting – whatever could improve the delivery of the materials was fair game. If it was input they wanted, they definitely got it. The suggestions came fast and heavy. It was rare to go for a couple of paragraphs without a suggested change. The CDC seemed amenable to changes: the time the meeting was done our facilitator had made pages and pages of notes.
At the meeting I got a chance to talk to Dr. Unger about the CDC’s multisite study and Dr. Klimas about her upcoming ME/CFS clinical trial.
The CDC Multisite Study
The huge multisite study featuring seven different ME/CFS doctors and their patients began in 2012. Dr. Unger gave a presentation on the initial findings at the FDA Workshop in 2013. In 2014 she reported analyses on the data were underway, that publishing was a priority, and that papers on medication use, medical history would be submitted as soon as possible. Four years later, except for a summary of the study’s makeup in 2017, nothing has been published or reported since.
The study was truly massive: 471 patients in the first round and even more in the second round which added two rarely studied subsets (pediatric patients and the severely ill) and two comparison groups (healthy controls and an ill comparison group including people with fibromyalgia, rheumatoid arthritis, multiple sclerosis, and cardiovascular disease). The practitioners agreed to standardized testing protocol. They still do their own tests, but all patients in the study got a core set of tests.
The CDC’s multisite study spread over 7 sites may include over 1000 ME/CFS patients
Some biologic data (routine laboratory and morning cortisol) was collected and an exercise study was reportedly to be done. The blood and saliva samples will go to form the basis of a potentially very helpful biorepository, given the extensive data collected from these patients.
Virtually everything the CDC could learn about these patients they have learned: symptoms, illness trigger, medical history, family history, medication use (supplements to drugs), lab test results, and functional level. The study should improve diagnostic protocols and help clarify patient subsets. The functionality and medication use data should allow the CDC to provide data on the effectiveness of treatments (IVIG, Ampligen, antivirals, etc.) rarely used by most doctors. The study should also be able to tell us if spending a lot of money on more proactive treatment protocols is more effective than going with more conservative treatment protocols.
Importantly Dr. Unger has said the results will help inform the CDC’s future educational materials. The study, then, could help surmount the “evidence-based” result hurdle which, for years, kept the CDC tied to the only protocols (CBT/GET) which have received much study.
The CDC appears to have decided not to report on the first round of the study and will combine the results of the first and the second round – which has just finished up.
The CDC’s funding woes have not helped. For the past couple of years the CDC’s funding has been cut out of the Congressional Appropriations Bill and then put back in. Unger said she has to rely on budgetary maneuvers (which take time out of her day) to keep the work flowing, plus not having a set budget every year does not help with hiring personnel.
More on the Multisite Study
Other CDC Activities
The CDC gets a lot of flack, but they’re involved in a number of potentially very helpful activities including:
- The preparation of an educational curriculum on ME/CFS for medical students that will hopefully help to finally introduce medical students to this disease.
- Providing funding to the National Association of School Nurses to create the first-ever surveillance system of ME/CFS among US school children and education of school nurses about the disease.
- Creating an algorithm to identify people with ME/CFS using electronic records in a managed care setting – hopefully helping doctors identify previously undiagnosed cases of ME/CFS.
- Reviewing the published literature and working on ways to capture the treatment protocols of ME/CFS experts in such a way that they can provide the basis for treatment by other doctors. This appears to be an attempt to bypass a missing gap in ME/CFS treatment – the few clinical trials, which has weighed heavily on the CDC’s need for “evidence-based” results. The CDC’s ability to validate or provide a strong basis for some of the treatments used in ME/CFS would be a major step forward for patients.
- Integrating ME/CFS into an optional module in the 2019 Behavioral Risk Factor Surveillance Survey (BRFSS). The BRFSS – the largest survey of its kind – will allow states (which opt in) to collect ME/CFS data on illness burden. States which opt in will surely get a surprise when the figures for ME/CFS patients blow away most other diseases. We vitally need more burden of illness data to advocate for ME/CFS.
- Working with the FDA to provide acceptable clinical outcome measurements that drug companies can use to assess the effectiveness of their treatments.
- Co-funded with the NIH the ME/CFS Common Data Elements Project.
System Reset – Dr. Klimas’ ME/CFS Clinical Trial Set to Begin
It’s always fun to sit at a table with Dr. Klimas. The information just flows and flows as her nimble mind considers one topic after another. It’s like a force of nature – it’s fun to just to sit back and watch her work.
Cortene’s attempt to do a system reset in ME/CFS has generated a lot of interest. Cortene brought a new drug to the field, funded it, and enrolled ME/CFS doctors in the CT38 trial that is now underway. Dr. Klimas got her ME/CFS reset trial going using another technique – coercion. Both clinical trials are unusual in that both hope to reset ME/CFS patients systems back to normal – forever.
When you can’t get funding through normal channels, you get creative, and Dr. Klimas has been nothing but creative in her ability to build a Gulf War Illness (GWI) modeling platform, hook ME/CFS into it, and use her GWI funding to explore ME/CFS. Her group has grown and grown and now includes computational biology, animal modeling, genomics, cell biology specialists and more.
Now she’s using another disease – Parkinson’s disease, no less – to get a treatment trial for ME/CFS underway. Parkinson’s Disease may not be so far off the beaten path as one might think. When Dr. Klimas opened the Institute of Neuroimmune Medicine in 2013 she included it, along with M.S. and other neuroinflammatory and neurodegenerative diseases, within the Institute’s purview.
That may have been prescient indeed. It turns out that Dr. Klimas’ engineering-computational biology techniques are in demand. She went way out on the skinny branches when she poured a ton of resources into an unproven and innovative approach to disease. When I asked Gordon Broderick, the head of the program at the time, if anyone else was doing what they were doing, the answer was an emphatic “no”.
Dr. Klimas exercise studies collects 9 million data points per exercise. Her team uses supercomputers to do their modeling.
Dr. Klimas’ team has gathered an amazing amount of data on what happens during and after ME/CFS patients’ Achilles heel – exercise. Measuring ME/CFS patients at nine time points before, during and after exercise, she’s gathered data on gene expression, cytokines, flow cytometry, cell function, neuropeptides (9 million data points total) in ME/CFS and GWI.
The models found that exercise first kicked off a mess of inflammatory pathways in ME/CFS which then faded in importance. Four hours later oxidative stress, the autonomic nervous system, stress and sensory pathways, and HPA axis pathways became upregulated. The models indicated that if you could tamp down inflammation and then try to reset the HPA axis, the system might revert to normal.
At least one major disease group thinks Dr. Klimas has struck gold with her approach. The Parkinson’s Foundation is apparently so excited at the possibilities of computational biology that they wanted to transport her and her entire team into Parkinson’s research. When that thankfully failed, they gave her a nice, big budget to get access to the computational modeling platform and train another team how to use it.
(The Parkinson’s effort will use the Institute’s modeling platform to understand the dynamics of the central nervous system in producing the disease. Studies are already underway using mouse models (Parkinson’s has a couple of them) to improve the current model.)
In return, she asked the Foundation to fund a 20-person ME/CFS trial. That trial is expected to begin this fall. It will include post-menopausal women and use the same drug combination (etanercept and mifepristone) used in the GWI trial.
Mouse models in GWI indicated that using the drugs in a staggered protocol – first to tamp down inflammation and then to reset the HPA axis – caused the immune, autonomic, hormonal, etc. systems of the mouse to normalize. Klimas does not have an animal model for ME/CFS, but the computational biology modeling has for years suggested the same will happen in ME/CFS. She just hasn’t had the funding to test it until now.
The participants will do an exercise test – then take down inflammation using etanercept for a month and then rebalance the hormonal system using mifepristone. If the model is correct, the treatment combination will push ME/CFS patients’ systems back to health.
The Gulf War Illness trial started earlier this year. I don’t know the results. The ME/CFS trial should either have started by now or be beginning shortly. (It’s already filled up.)
Check out Dr. Klimas’ fascinating approach to ME/CFS in a Solve ME/CFS Initiative Discovery Forum Talk
Speaking of the post-menopausal women in the study, I asked Dr. Klimas if menopause tended to hit women with ME/CFS harder than usual. She noted that a CDC study found that menopause tends to hit women with ME/CFS eight years earlier than normal. In her experience, women with ME/CFS do better staying on bioidentical hormones (estrogen/progesterone). She found that out after taking some women with ME/CFS off of bioidentical hormones when an estrogen study found an increased risk of cancer. Taking women with ME/CFS off of the bioidenticals sometimes caused massive and hard to recover from crashes.
Conclusion
We’re in for some exciting results – from the long awaited multisite study, to the Cortene trial, to the metabolic trap hypothesis work (next blog), and to Dr. Klimas’ two-drug trial. No one has ever had the audacity to suggest they might not only help people with ME/CFS but may be actually able to reverse it. Now two groups think that’s a possibility and, if the metabolic trap hypothesis works out, we’ll probably be able to add a third group to that set.
It may be that none of these efforts will work out but each should still inform us about ME/CFS. Dr. Klimas, for instance, will be gathering massive amounts of information in her trials and has powerful models she can tweak if that particular drug combo doesn’t work out. Similarly, Ron Davis has the resources of the Stanford Genome Technology Center, a huge study underway with Stanford geneticist Mike Snyder, and a new collaborative ME/CFS Research Center at Harvard if the metabolic trap doesn’t work out.
Meanwhile the CDC’s multi-site study – perhaps the biggest study ever done in ME/CFS – might be able to start getting ME/CFS experts protocols into the medical mainstream giving patients more options. Plus the CDC is working on ways to increase diagnosis rates, get ME/CFS into medical school curriculum’s, produce acceptable clinical outcome measures for drug trials and more.
This looks promising! If this is proven to help ME/CFS, how long will it take before we will all get treated with this? Would insurance companies pay for the treatments? Thank you so much for all that you are doing for all of us with ME/CFS!
The really nice thing about Dr. Klimas’ approach is that it uses available drugs. If it works it might even be a one-shot deal -which to me sounds rather affordable 🙂 That seems like a heck of a lot to ask for – but that’s what the models suggest. We’ll see if they match biological reality. The other good thing is that even if these drugs aren’t THE answer they and Dr. Klimas’s models will hopefully get us closer to the answer or answers.
Is Dr Klimas & her group communicating/collaborating in any way with researchers/clinicians that were part of the recent OMF symposium?
Not that I know of unfortunately. I did send Ron Tompkins Dr. Klimas’ video because he did similar time-points studies in sepsis and trauma. I think, given how far they’ve gone with the modeling, the Klimas group would be a great fit for the Working Group. The more people talking the better.
Definitely. She ought to communicate with Robert Phair too about the metabolic trap. Perhaps her computer model lines up similarly with the metabolic trap model.
How nice it would be if all these interesting hypotheses – the metabolic trap, Cortene’s hypothesis – which also projects increased serotonin levels in the brain, Dr. Klimas’s work – which focuses on neuroinflammation and the HPA axis (aka Cortene) merged together? I guess the encouraging thing is that coming from different directions and without any interaction they seem at least generally to be ending up in similar places.
I hope Dr. Klimas can add metabolomics to her research efforts.
Enbrel is an immunosuppressant, a TNF blocker. The manufacturer says:
“Patients treated with ENBREL are at increased risk for developing serious infections that may lead to hospitalization or death.”
Mifepristone is an anti-progesterone, anti-cortisone drug specifically not recommended for patients with adrenal insufficiency.
As a female cancer survivor, these make me very nervous. What is the exact logic for using them?
Other than the fact that these are the drugs that the extensive modelling predicts will work, I don’t know. The first one is designed to reduce inflammation by a certain amount and the second one is designed to to press HPA axis activity long enough so that the system can reset itself. As Iunderstand it correctly these are not drugs that would be used continuously. They are drugs that would hopefully reset the system back to normality. So hopefully they’re use would be quite temporary which would hopefully ameliorate any potential side effects.
Aren’t there a few GWI studies with mifepristone that showed no benefit? Not sure why Dr Klimas would pursue it in the face of that.
Yes there is a GWI mifepristone study that had mixed results but this is not a mifepristone study….It is a combination staggered drug study. The models suggest that mifepristone will work effectively after another drug has reduced inflammation.
Comparing this study to that study is like comparing apples and oranges.
The drugs in the trial are not just shots in the dark. It’s taken years,the analysis of millions and millions of data points and extensive computer modeling to come up with these drug suggestions.
Ive been following the dampening down protocol since I first heard about it. So have been always taking a combo of anti inflammatories (ibuprofen together with a large dose of curcumin a natural anti inflammatory extract from turmeric) and one antihistamine (either Ceririzine or Fexofenadine) immediately after I think I’ve over exerted. then tapper off by the end of day 2.
I have found this often prevents PEM although not every time and it doesn’t take away the general ME base line symptoms.
I’ve found the Fexofenadine to be better although I don’t think either antihistamines cross the blood brain barrier, so would like to find one that does.
I recently increased LDN to slightly more than my normal dose 2 days after exertion then reduced back to my standard dose and have found a slight improvement in the overall base line. But it’s too soon to say on this LDN method as ME is such a fluctuating illness, I could naturally be in a good spot.
Note: I always take the recommendation dosages on the packet and don’t take two of the same class of medicines at the same time
??. Now that you mention it I don’t know why I haven’t tried loading up on the anti-inflammatories before exercise and see what happens. It wouldn’t cure me CFS but it might stop to pem symptoms to some extent because the downstream effects of inflammation appear to be critical.
I’ve recently been loading up on antihistamines and anti inflammatories immediately after exertion too. Today I took them before and after exertion, also I too temporarily increased my normal LDN dose by 0.5mg and took one ibuprofen more than the recomened dose as I’ve really, really over exerted physically today in both time and energy, which has me expecting a big crash (usually starting in about 48 hours).
I have reasonably severe ME (not in the ‘very severe’ catigory thank god) but I’m normally house bound half the time feeling ill. and spend about 22- 23hrs a day horizontal. So I’m praying I’ve prevented PEM from this latest exertion with the extra meds, otherwise I’ll be spending a good 2 weeks in bed very unwell. I’ll update you guys after 72 hours or so to if the combined anti inflammatories and anti histamines and LDN worked or not. Fingers crossed!!!
Ok I’m back and yes the anti inflammatories with antihistamines worked. No PEM after that much bigger than normal exertion.
Immediately after I had 3x200mg ibuprofen
3 Curcumin capsule (a natural anti inflammatory)
Plus I took Certirizine immediately after as well.
And boosted the LDN by 0.5mg
Note: I also took ibuprofen and the antihistamine fexofenadine earlier that day (as I exerted twice on the same day)
I also took a small but steady dose of Clonazepam to relax for 2 days 0.25mg every 4 hours
The result no PEM began in the normal 48 to 72 hour window.
However a week later for unrelated reasons I couldn’t sleep until 5am and have now had an awful sickly crash! I took the above med combo (maybe a little late, but to no avail)
Can’t bloody win with this vile illness.
Sigh
By the way, I normally drink water and baking soda as an anti inflammatory….
https://medicalxpress.com/news/2018-04-soda-inexpensive-safe-combat-autoimmune.html
“I don’t think either antihistamines cross the blood brain barrier, so would like to find one that does.”
Benedryl (diphenhydramine) crosses the blood-brain barrier. I have found it to be very helpful, especially for insomnia. It’s also inexpensive and seems to be pretty safe. It’s strange to me that some stores sell it as a sleep aid and other stores sell it for allergies. Nobody advertises it for mast cell activation or ME.
Theoharides has several papers claiming that mast cell activation in the brain plays a role in ME. That suggests that first generation anti-histamines could be helpful, and that has been my experience. Of course, nobody knows for sure because no researchers have bothered to ask the question in a serious way.
Instead we get decades of chasing after cytokines and NK cells and pathogens and gut bacteria and now “big data” but we never get any real answers, real treatments, or social support.
As a computer programmer forced into early retirement by ME, the idea of looking for a needle by making a bigger haystack is counter-intuitive. I’d rather burn the hay and hold a magnet over the ashes than examine each piece of grass to see if it resembles a needle in some way.
As for the CDC study, it’s little more than crumbs for 17 million people worldwide waiting for answers. It doesn’t matter if they study 400 or 40,000 if they never publish anything. After six long years, we got nuthin. Not even a time table or a guess. Just a, “Maybe some day. (If the insurance industry will let us)”
While I understand the too little, too late sentiment, and am chagrined at the long wait for results they will come and hopefully we’ll be happy when they get here. 🙂
Good idea on the antihistamines – check out this blog for some more suggestions on using over the counter drugs to help determine if you have MCAS.
What is the dampening down protocol? I have been using ibuprofen and antihistaminiques on a regular basis, but is there actually a system to my madness???
Interesting what you say about the LDN and PEM. I managed to get on LDN a month ago and my resilience to PEM appears to have improved significantly. Yesterday I did 10,000 steps and I still make it to work today! I’m still tired and a bit wobbly but not my usual crashed out symptoms. Normally I can’t do more than 8,500 without PEM kicking my butt. I’ve been pacing between 6000-7000 for most of this year but now I wonder if I might be able to push the envelope on that…
I have still been getting fevers, I suspect triggered by stress though.
Why is Texas always left out of research studies? Houston has one of the largest research Consortium in the country. Can something be done to include them?
As ME/CFS research expands I can’t imagine but Texas will be in there. We just need a dedicated ME/CFS researcher there. Are there any there?
The first part could be titled: “CDC actively seeks to end the Wesley and Pace era: CBT/GET silently disappears in favor of a result driven approach.”
That’s great news! Together with reporting about the many efforts towards better understanding this disease and better medication you wrote a blog truly uplifting my spirit. Thanks Cort!
?. I think the potentials of the multi-site study are vast. Let’s hope they are achieved!
Sadie Whitaker of the SMCI had a really interesting way of getting around the CDC need for evidence-based results. It has to do with a foundation associated with the CDC.
Thanks for the update, Cort. As always, you summarize complex ideas in an understandable way, which is helpful for those of us without a background in science.
When I briefly saw Klimas during a visit to one of the nurse practitioners at NSU in June, she said that the “reboot” protocol would be different for men than for women. Also, it sounded like she still hadn’t obtained enough funding to start a similar trial in men yet. Did she say anything about a study for men with ME/CFS when you talked to her?
Did she give a clue how the GWI study is going?
>she said that the “reboot” protocol would be different for men than for women.
Damn. The women CFS protocol has the advantage of being tested in GWI, rat model and in humans. I wonder what the men’s protocol will be.
>Also, it sounded like she still hadn’t obtained enough funding to start a similar trial in men yet.
Damn again.
No. I know she wants to do a trial in men but I don’t think she has the funding yet. I just participated in an exercise study for men.
If the one in women works out though that should give her a good foundation for getting funding for one in men I would think. I think but am not sure that the drugs may be different for me.
A gender difference popped up in a metabolic study as well: men go after the amino acids in their muscles while women go after another source which I can’t remember for an energy resource.
Cort, regarding Klimas’s CFS/ME study, she says in the Discovery Forum 2017 video you linked that she expects to start the GWI human trials by Christmas 2017. Does she have any information from the GWI study that makes her confident in starting the same trials in CFS/ME patients? I suspect she may have some preliminary data and clinical evidence from it by now.
Good question. These things always seem to take longer than expected. When I talked with her at the end of August I think one person had gone through the trial and my impression was that the results were good.
Today, WebMD was on Twitter promoting their ME/CFS article which recommends Graded Exercise Therapy and Cognitive Behavioral Therapy. Hopefully, WebMD learns something about ME/CFS from the CDC roundtable.
Jeez…I guess they didn’t get the message…
Cort, you are a breath of fresh air to so many of us. In regards to menopause, I entered it right on time, but it has made my symptoms much worse.
I would love to take part in any of these studies if possible.
Let’s hope that Dr. Klimas’ small trial works out and more, larger trials are on the way.
Have now written 3 times..comment vanishes if I go off the page, even to correct one error.
http://www.positivehealth.com/article/cfs-me/a-radical-care-pathway-for-me-cfs
Thanks, Nancy. Well written and good advice for the doctors we see. And to share with anyone who may just be noticing signs of ME/CFS, and have the chance to recover!
Nancy, if only this article could replace NICE’s guidelines!!!
I wrote to Dr. Ben-Zvi in 2010 about using mifepristone to reset the hpaa – I even ordered some from an overseas pharmacy to try it out – glad someone is finally following through on the idea. 😛 In my research I found an herb that has the same effects as mifepristone, albeit in a gentler fashion, as well as being a strong antioxidant. I’ll post the abstract when I get up tomorrow. I took it as a tea around the clock to get my blood levels constant, and by the third or fourth day there was definitely some kind of hormonal/ system reset. Not 100%, but it clearly did something. I started posting about it on PR and they banned me for some bizarre and ridiculous reason, lmao. what a bunch of a-h0les.
What herb/antioxidant? ?
Please could you name the herb you mentioned? Thanks
Please disclose the herb you have taken. Thanks.
Interesting! That idea came from this study:
https://www.ncbi.nlm.nih.gov/pubmed/19165314
Hello. As someone with a very close friend’s daughter who has developed ME I am finding, her journey and some of her symptoms to be similar to my own auto immune disease history. For over 30 years I too had this supposed ‘mysterious’ illness which landed me in hospital many times and several near death experiences. All blood tests were usually in the normal range except the ESR which was always off the table!! (As was my SAA but during all that time that was never checked). As a long time suffererer of what we now know to be a recognised auto-immune disease called T.R.A.P.S. (Syndrome) my life was effectively ‘saved’ when I was officially diagnosed in 2010 by the long time research and work carried out at The Royal Free Hospital (Amyloidosis Centre) in London. Perhaps their research into many auto immune diseases may hold a link? Following the death of a cousin many years ago, samples of blood were taken our extended family (healthy and not healthy) and were used as research into conditions with similar symptoms where there had been ‘odd’ deaths. My cousin’s death at the time was inexplicable in many areas.
I know that I am so lucky that the outcome of all that clinical research was very positive for me in 2010. I was prescribed Anakinra Injections daily and that meant the end of a ‘ living hell’ not just physically but also psychologically, virtually immediately! The relief that finally someone believed that it was not all in my ‘head’. It is in that expression that I empathise therefore so much with what many ME sufferers have felt or are feeling even jow. Anakinra (Kinaret) is an immune suppressor. Whilst ME and TRAPS are not the same disease my instinct tells me that perhaps there may be a link here? I say this also because my sister died from MS, a few years after my cousin and she was also found to have had undiagnosed T.R.A.P.S. On the post mortem. So my family genes have tendencies towards both MS and TRAPS. I wonder therefore whether there could be some collaboration betwen yourselves and the Royal Free and their research into auto immune disease about ME. I was told for years that I had CFS, (which means there are similarities) then later on I was told I had Epstein Barr Virus. After 5is it was Chrohns etc etc and so on. In the end I accepted that no one really knew what I had and I just had to carve out a life living with it. My willpower to live got me through. During an ‘attack’ I would also experience incredible fatigue, be bed ridden, have hallucinations, and test positive for areas of huge inflammation in the body. In this case, it was not in the brain but in the main organs. etc. (This caused me many unnecessary operations! Surgeons loved to say “as a last resort lets take a look inside you’ )! Only to find all would be relatively normal!
Of course one huge differing factor here is the extremely high body temperatures associated with TRAPS which are not a part of ME. but the point I am trying to make is that sometimes a breakthrough comes from looking ‘outside the box’ . Perhaps they are indeed two completely different illnesses with no relation to each other at all but perhaps there is a link somewhere. I am only suggesting a collaboration. I have mentioned it to the Professor once but I don’t know if it was pursued. Seeing as you mention Parkinson’s disease here and MS my guess is you will be looking only at neurological inflammation that crosses the BBB but maybe inflammation that crosses into organs might be also worth a look?
Hi Maria,
Thx for sharing this information. Being closer to hypothermia then hyperthermia I won’t be affected.
I’ll take a very wild guess at “perhaps there is a link somewhere”:
In https://ghr.nlm.nih.gov/condition/tumor-necrosis-factor-receptor-associated-periodic-syndrome#genes I did found
“Most TNFRSF1A gene mutations that cause TRAPS result in a TNFR1 protein that is folded into an incorrect 3-dimensional shape. These misfolded proteins are trapped within the cell and are not able to get to the cell surface to interact with TNF.”
Now misfolded proteins are more then once considered to play an important role in ME, glutathione depletion, oxidative stress and to my own wild speculation EBV/Herpes may increase protein misfolding. If indeed protein misfolding were very high in ME then it may increase the misfolding rate of TNFR1 a lot too.
The real “wild-guess” part IMO is: would it be to that extend that ME showed part of the symptoms of TRAPS due to having a strongly increased misfolded TNFR1 rate?
If so, at pure TRAPS symptoms TRAPS itself would obviously be worse, but ME would have a far wider variety of symptoms as many more proteins would see increased misfolding rates.
Thanks Maria for mentioning TRAPS. I had never heard of it and will add it to Health Rising’s list of conditions that can mimic ME/CFS.
So much hope ???
Are there any innovative doctors that might think it worthwhile to let patients with little to loose, try out mifepristone and enbrel?
Can an ordinary doctore prescribe these meds, or is hospitalation needed?
Dear Cort. I am up for a pet-scan, do you know if the assumed neuroinflammation we have can be identified by regulary tracers?
And; you seem in a better shape (thank God we need you here), are there any treatments you tried (that you can share) that made a big difference? And IVIG, is neuroinflammation the target for this treatment? I understand if it is to personal to answer on yourown treatmentprotocol.
Thank you again for incredible work ????
No,the neuroinflammation like the Japanese study used a special tracer.
They used 11C-(R)-PK11195 and PET to investigate the existence of neuroinflammation in CFS/ME patients.
This sounds really interesting – thanks for reporting on it, Cort.
I’m guessing the trial is starting with post-menopausal women because mifepristone is used to induce abortion, and using this group means there’s no possibility that any of the participants could be pregnant. One benefit of the approach is that we won’t have to wait years for the result; if it works, it should be apparent within weeks. Everything crossed!
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when u say “October 18 2017 after being on the herbs you recommended” “stumbled upon you guys” are u referring to Cort or healthrising or are u addressing perfect health ? Are you in anyway associated with perfect health and if so in what capacity? If it was one of those other than Cort directly who was your contact person there? How long were u on the herbs and what doses before the symptoms subsided? in what form did u take the herbs? thks
Cort, I follow your blog, and I want to help by adding to your coverage of fibromyalgia and neuropathies (particularly small fiber neuropathy). PLEASE CONTACT ME!!! I’m very interested in research on re-sets,and on making such things patient-available, but my own issue is very much fibromyalgia and neuropathies so that’s where my expertise lies. I’m an effective patient advocate but want to get better, and (maybe) get paid something in the process. Money isn’t as important as helping, though. I just need to survive. Ph.D., not MD, but I can still learn really fast. One way or another, effective advocacy is my calling.
Stupid question Cort, maybe just the way it was written. When you state that other organizations were invited but declined. Kind of one of those things that could have a double meaning. Other organizations were invited but unable to attend.
Right. I don’t know the reasons they did not attend and I don’t know which ones were asked. With regard to major medical organizations my guess is that they were asked in enough time that they could have found someone to attend but I don’t know.
As many have said, ths is very promising!
How likely are any of these findings / cures ging to reach the UK and other arts of the world?
Here in the UK, we have no access to anti virals and any other treatments people in the US seem to have via their insurance companies.
I’m struggling to get a trial of B12 injections even privately!
So frustrating!
Good question Fiona.
Re the B12, if you can’t get the injections, you could try a transdermal B12 spray which Dr Myhill sells online. This has been quite effective for me. I think the dose of it that she advises may be too high though as it caused me to get hypokalemia.
Most people in the US do not have access to the things discussed in this forum, because there are only a very few knowledgeable doctors. Some doctors will give you the diagnosis, but won’t offer any help. And most insurance companies won’t pay for “experimental” drugs if a patient does find a doctor willing to try.
Thank you for your tireless (!?!?!????) work in following and reporting out Cort!
Does anyone know the doctor that uses higher dose Valtrex for CFS/ME? I believe he will send his instructions via email? Thx
Cort, you said the trial is starting “this fall”. Does that mean fall 2018 or fall 2019??
Amazing that a computer can make these suggestions for treatment. I was just talking to a doctor today and was asking if I could try benadryl and a medrol dose pack to reboot the immune system. He said nope. I said we do it all the time for anaphylaxis reactions and it works. He left the room shaking his head. Has anyone ever been given a medrol dose pack? Did it do anything?
Does anyone know when Dr Klimas’ system reset study is due to publish, or whether there are any preliminary results?
Jane, it’s Jon Arnow…How are you doing?. I Just saw movie , ” Ghost”…and thought of Sue..