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Dr Nath Talks on the ME/CFS NIH Intramural Study

It looked like we were going to be late … again. It was pouring cats and dogs as we eased the van around tangled web of streets that is the NIH campus scanning glumly at the rain-obscured buildings. Even our guide on the phone seemed to be lost.

It had been a wild 12 hours. The night before, reaching up to turn on the fan on my brother’s porch, I’d let loose a rather large bug which tumbled into my eye. Howling with pain I stumbled off to the bathroom where I managed to wash it out – leaving my eye reddened and swollen. The next morning, my eye still swollen, my partner insisted I see an eye doctor.

 

NIH

Getting to Dr Nath’s office proved to be a challenge

To our surprise we found somebody. The problem was was that his office was right in the heart of downtown Washington DC. – where parking is scarce and traffic cops take their jobs very seriously. Finding no parking we stopped in a loading zone across from the doctor’s office, hoping that the big yellow van with it’s solar panels, Nevada license plate and all would for the next 15 minutes be taken for a loading van –

After being assured the appointment would be short, I dashed inside where I was  bombarded by frantic calls from my partner (who does not drive the van). She had immediately been accosted by first one then another traffic cop.

After seeing the doctor who informed me (for $250 dollars) that insects in the eyes almost never cause problems (but who did give me drops) I dashed back out to the van to find my now none-too happy partner.

We sped off in the rain – still seemingly on time for the appointment with Dr. Nath. Hauling up to the NIH we tried no less than three entrances – only to be turned away at each them (our oversize vehicle thwarting one attempt) – and directed to the next. Finally, as our appointment time came and went, we found the right entrance – for, ironically, delivery vehicles.

After going through an extensive (and time-consuming) security check we headed off into the labyrinth that is the NIH clutching small hard to decipher maps and immediately got lost. The  minutes continued to tick by and rain strengthened into a deluge and eventually we managed to steer onto the right street. Our guide, still on the phone, told us to stop, we jumped out of the car and looked up, rain pouring down, at a steep, muddy climb.

Five minutes later – 45 minutes late for our hour appointment, we strode, soaked and bedraggled into Dr. Nath’s office. He immediately set us at ease, and with his next appointment running late stayed overtime with us. We were there to talk about the NIH Intramural ME/CFS study.

The NIH Intramural ME/CFS Study

Dr. Nath informed us that the applications to be in the NIH Intramural ME/CFS study have been gratifyingly robust.  Dr. Nath noted that it was entirely possible that this is the most rigorously examined patient group ever assembled for a study.

Dr. Nath

Dr. Nath is leading the study. He has been around. He received his MD degree from Christian Medical College in India in 1981, completed a residency in Neurology from The University of Texas Health Science Center in Houston, did a fellowship in Multiple Sclerosis and Neurovirology at the same institution, and then another fellowship in Neuro-AIDS at NINDS.

Then it was up to Canada, where he held a faculty position at the University of Manitoba (1990-97), and then he was at The University of Kentucky (1997-02). In 2002, he became Professor of Neurology and Director of the Division of Neuroimmunology and Neurological Infections at Johns Hopkins.

in 2011, he became the Clinical Director of NINDS, the Director of the Translational Neuroscience Center, and Chief of the Section of Infections of the Nervous System. His research focuses on understanding the pathophysiology of nervous system infections and their outcomes, and the development of new diagnostic and therapeutic approaches for these diseases. He’s heavily involved in HIV research, the role endogenous retroviruses play in neurological diseases, and “undiagnosed neuroimmune and neuroinfectious diseases”.

He recently wrote a paper on Herpes Viruses, Alzheimer’s Disease, and Related Dementias: Unifying or Confusing Hypothesis?, which examined what role herpesviruses might be playing in dementia.

The NIH Intramural Chronic Fatigue Syndrome Study

The study takes place in two parts: a one week part which further assesses the potential participant and another one week section which measures a wide variety of parameters before and after an exercise test.

Requirements for entry are high, however, and not often met. You might say that many have been called – or rather have called – but few have been chosen. That was OK with Dr. Nath. “We need,” he explained, “to make sure that we’re studying the right population. That’s the best way to get to the answer, and then it’ll be broadly applicable.”

The response has been excellent.  Many people are traveling to participate, and they’re coming from all over. The NIH is even getting interest from people in other countries.

As of Dec. last year, 337 people had inquired about the study. One hundred and seventy-three were quickly screened out, and 164 participated in phone interviews. One hundred and twenty-seven made it to the medical record assessment stage.

Multiple reasons thwarted would-be participants from participating in the study.  The study required onset within 5 years which was triggered by infection. One-third had had the disease for too long, 20% had no evidence of infectious process (doctor’s records are required), 9% were too sick to travel, and just 3% were unwilling to have a lumbar puncture.

community ME/CFS

Nath noted that the ME/CFS community was very motivated to be in the study

The researchers were surprised at the last two figures. They expected, based on their experience from past studies, much higher percentages of people who were too sick to travel or unwilling to have a lumbar puncture. Dr. Nath well knows how difficult it can be to get people to participate in a study, but that’s not a problem here. Calling the numbers “very good”, Dr. Nath said the ME/CFS community was clearly “very motivated to participate in the study”.

It is not an easy study! It’s a two-part, two-week plus study on a population, which studies suggest, has the lowest functionality of any disease. The study includes a lumbar puncture, a maximal exercise test, several nights in a metal box (metabolic chamber), tilt table test, muscle biopsy, brain scans, lengthy neuropsychological tests and scads of blood tests. Every part of you is going to be probed.

Plus, you have to provide your entire medical history, get interviewed several times, and then, most likely travel.

Dr. Nath said he looked at the study – which is clearly larger and more intensive than most  – and said, “who is going to enroll in this study?” Laughing, he joked that, “I wouldn’t volunteer on my own study!” He was afraid no one was going to show up!  Instead he said the patients were very willing to undergo all the tests and are grateful for it.

Recruitment has been good, but as with any study, Dr. Nath said, it was high at first, and now it’s tailed off. As of March of this year, 19 ME/CFS patients and 21 healthy controls had completed the first phase of the study, and six people with ME/CFS and 7 controls had completed phase II.

Thus far, then, about half the projected participants (n=40 ME/CFS; 40 healthy controls) have gone through the first week of the study and about 15% have completed the entire study.

Quite a few people with autoimmune disorders have shown up during the filtering out process. Nath suggested that could be an interesting cohort to study on its own.  He’s also found quite a bit of head injury and loss of consciousness – which makes MRI and brain scans difficult to assess – and people with seizures and strokes. Interestingly, bnly one person had had a diagnosis of major depression….

High Percentage of Rare Diseases 

It’s a small sample set but it’s remarkable how many people participating in the first week were diagnosed with a rare disease. In something of a testament to the thoroughness of the study, almost third of week one participants (6/19) were found to have a rare disorder which the researchers believed was probably causing their symptoms and dismissed from the study. One appeared to have Parkinson’s Disease, another a neurological disease and I’m unsure of the others.

The study was designed to catch these people.  In fact because ME/CFS is something of a wastebasket diagnosis it went to extra lengths to ensure it was really studying ME/CFS.  Plus Dr. Nath reported that neurological diseases are inherently hard to diagnose anyway.  It is not unusual for people with multiple sclerosis, Parkinson’s, etc to be misdiagnosed with some other disease initially.  Plus, the opposite can happen (and has happened in ME/CFS) with some patients being misdiagnosed with M.S. for many years only to find later that they have some other immune disorder.

Big Data

They are gathering lots and lots of data – which brings its own problem. The study includes two different brain scans, blood, saliva, urine and stool samples, exercise data, tilt table data, spinal taps, Seahorse data, metabolic room data, cognitive testing, muscle and skin biopsies, and I’m probably missing some. I asked Nath, how will they able to integrate all this disparate data?

rare disorder chronic fatigue

Rare disorders are popping up at a high rate in the study group

Nath agreed that it was a challenge, but noted that that kind of challenge is a pretty common challenge now. Some of the really big Alzheimer’s and Parkinson’s studies contain thousands of individuals, each of whom has done thousands of tests. Computational biology has become a major part of medical research.

Google, not surprisingly, is collaborating with the NIH to create better ways to analyze data. Many of the discoveries in medicine today, Nath said, actually occur as breakthroughs in physics; MRI and CT scans, for example – came from physics.

Their general hypothesis is that an infection triggers brain and immune system issues (ranging from persistent immune activation to immune dysregulation) that stay stuck.  They don’t believe the nature of the infection is particularly important.

Check out a disease Nath believes could prove a model for ME/CFS

East African Disease Informs Nath’s Search for the Cause of ME/CFS

No Preliminary Findings Yet

Nath was unable to give me any preliminary findings. One reason is that they are storing samples so they can run them all at the same time. Another is that, echoing Ron and Mark Davis’s thoughts, they don’t want to even try to come up with hypotheses yet. They simply want to gather more and more data.

Making a conclusion on the basis of small samples is, Nath said, the kiss the death. They will not even try to interpret their findings until about half the study is done.

If, when they get to the end of the study, they see trends but don’t quite have a significant result, they’ll do sample size calculations to determine how many more patients they’ll need to see to get to statistical significance. If the calculation says do another 10 patients, they’ll probably expand the study to do 12 more. If the calculation says do another 100 patients, that’s too much.

They’re preventing another kind of bias by recoding the samples, so the analyst doesn’t know which are from patients and which are from controls.

The Study

Brian Vastag’s visit raised the issue of mitochondrial problems. Nath believes studying the muscle itself may be more important than assessing mitochondrial problems using the blood, and added muscle biopsies to the study. The muscle biopsies will be tested for DNA analysis, structural issues, and staining for various kinds of cells.

The Open Medicine Foundation and Ron Davis apparently believe likewise. They’ve pumped a million dollars into an ME/CFS Collaborative Research Center at Harvard lead by Ron Tompkins which will focus on figuring out what is going on in the muscles.

muscles ME/CFS

Dr. Nath believes the muscles could tell us much about ME/CFS

Because lots of patients have autonomic symptoms, the NIH is doing tilt table tests. Once those turn out positive, Nath said, the next question is why the autonomic nervous system problems are present. They’re doing small fiber neuropathy skin tests and examining the heart, peripheral nerves, adrenal glands, and sympathetic nervous system functioning.

I asked him if there were any surprises, and there were.  As Robert’s story will show, the NIH doesn’t seem to be prepared for the level of devastation ME/CFS can wreak in a relatively young group of patients.

Nath said his personal contact with the patients has led him to develop a real appreciation for the disease. These patients, he said, “are devastated”. Whether or not this study finds a cause, the reality, Nath said, is that the lives of the study patients are “totally messed up.” Then he made an important point.  Seeing the patients in the flesh naturally causes him and other researchers to develop additional empathy for them and “another level of appreciation” for them and their disease.

It was clear that just by being there and exposing the researchers and doctors at the NIH to this disease, the participants in the study are making a difference.  The lengths to which some patients are going to participate in this study are amply illustrated by Robert’s story.

Participating in the Study

The NIH needs more participants. If you’re interested in helping to further ME/CFS research by participating in the study, check out the study criteria below.

All participants must be 18-60 years old and have at least a 7th grade education. People whose ME/CFS started after an episode of infection and who have severe symptoms lasting from 6 months to 5 years are eligible to participate in the study.

Find out more here.

A former doctor on his experience going through the NIH’s intramural study

A Former Doctor Goes Through the NIH’s ME/CFS Intramural Study

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38 Comments

  • Guido den Broeder

    March 23, 2019 at 3:22 pm - Reply

    What does this have to do with ME?

  • Tina

    March 23, 2019 at 3:33 pm - Reply

    “Almost third of those people (6/19) were found to have a rare disorder which the researchers believed was probably causing their symptoms and dismissed from the study.” – – – CORT are you able to tell us what this rare disorder is? I am not able to participate in this study because I have been ill for 11 to 12 years now. Interestingly, 5 to 6 years into my illness I began to have muscle issues and I now have tested positive for Ro52 and Jo-1 antibodies. I was given a provisional diagnoses of Antisynthetase Syndrome, but in the end it may be overlap with inclusion body myositis. All rare disease stuff. But I always go back the fact that the first 5 to 6 years were more like energy production issues. Gosh, I hope this study is successful and getting to the root of all of this.

  • Pat

    March 23, 2019 at 3:43 pm - Reply

    It’s a pity they’re not studying anyone who’s been ill for longer than 5 years. My daughter’s been very severely affected for 18 years and would want to participate if she could, although just getting her there would be a huge undertaking.

  • konijn

    March 23, 2019 at 4:07 pm - Reply

    only maximum 5 years ill and being able to do all this severe tests! Where does that leave me and so many others bed or housebound and ill for decades?
    And so slow the study goes!
    I am not impressed…

  • Aidan

    March 23, 2019 at 4:18 pm - Reply

    Cort, what rare Brain disease do they have aside from Parkinson’s? Did he mention also anything about hemochromatosis or carriers of this genetic illness? Did (HATS) hereditary alpha

    tryptasemia syndrome come up in the conversation? I know Ron Davis did mention his Son had a rare Brain illness but I have not heard what it was, have you? We still have not heard more

    from Ron Davis on the link he feels as a cause of East African Sleeping Sickness I wonder why

  • Bottsie

    March 23, 2019 at 4:41 pm - Reply

    When first announced, I was willing, but not qualified, to participate in this study because I had been sick more than 5 years and had been diagnosed with mild to moderate sleep apnea…which I ‘treat’ by sleeping on my side. Now, I have aged out.

    I totally understand the stringent participation requirements, but I am wondering just how many of the diagnoses that kept people from participating were actually MISdiagnoses. A diagnosis given to a difficult-to-diagnose patient by a frustrated doctor who found ‘something’ to check most of the boxes of a disease in an effort to find relief for his/her patient. A neurologist tried to make me ‘fit’ an MS diagnosis, but could not.

  • Cort Johnson

    March 23, 2019 at 4:44 pm - Reply

    If this is a question about what types of patients participate in the study they are all documented-post infectious onset, have PEM, meet the CCC criteria and are screened by ME/cFS experts including Dr. Peterson – I think they have M.E. if that’s the question.

  • Cort Johnson

    March 23, 2019 at 4:46 pm - Reply

    Hopefully Dr. Nath will tell us more at the NIH conference in early April (he is speaking). They seemed to be a bunch of disease: one was Parkinson’s and another was another neurological disease…

  • Cort Johnson

    March 23, 2019 at 4:47 pm - Reply

    I don’t know. I asked but I got a general answer and an burning to find out. Remember these people were already screened by ME/CFS specialists who are probably pretty good at missed diagnoses.

  • Cort Johnson

    March 23, 2019 at 4:50 pm - Reply

    As somebody who has it for about twice as long as your daughter I can empathize. The study was designed that way so as to try to study ME/CFS in its purer state before it’s morphed or caused other problems.

    Once the conclusions come in they will next be tested in the rest of us…

  • Sarah

    March 23, 2019 at 4:59 pm - Reply

    Bless all those who qualifiy and volunteer to be part of this important work. What an undertaking. I’m too old and have been sick too long to do it. I wish I could volunteer, but I expect they may find more in those patients who are newer to the disease. And who knows? Maybe the time will come when they want to examine older cohorts. Thanks for the update on this, Cort. Sorry getting there was such a trial.

    • Cort Johnson

      March 23, 2019 at 5:44 pm - Reply

      Part of the adventure 🙂

  • Waiting

    March 23, 2019 at 5:37 pm - Reply

    Konijn, I believe this study is the kind of comprehensive & deep dive the ME community has asked for — for a long time now.

    Even though those of us who have been severely ill for much longer than 5 years cannot participate in the study ourselves, I would imagine this restriction serves a specific scientific research purpose – probably to have as many scientific controls as possible so that the resulting data is robust.

    We all desperately want answers for ourselves — totally understandable — and so many of us would dearly love to be included in a study like this to get those answers – even if (maybe especially if) we learned we had a rare disease instead of ME. But hopefully this big, robust study will answer core questions about this disease that will help all of us.

    And the fact that it’s being conducted – at the NIH – by an engaged, experienced and compassionate researcher – is just amazing considering the neglected and maligned history of this disease.

    As a group, our suffering is immense and the lack of progress on the disease terribly unfair. But I have hope these researchers will help us. At least they are working on it. I hope those of us able to advocate for more of this research will continue to do just that.

  • Perrier

    March 23, 2019 at 8:50 pm - Reply

    So, if I have understood the summary, it looks as though a good number of people turned up for the study believing they had ME/CFS, (presumably seen and diagnosed by their doctors) and in fact, they had other illnesses entirely.

    The high number is a bit alarming, and says that doctors do not investigate adequately, and that a diagnostic test is urgent.

    • Cort Johnson

      March 24, 2019 at 12:55 am - Reply

      It does seem surprising particularly since some of these patients were probably worked up to the hilt by prior doctors. I hope to find out what tests Nath did which uncovered this rather sizeable group.

      If this relatively healthy (so to speak) ME/CFS cohort had this many rare diseases I wonder what’s going on with the more severely ill..I would think even more would pop up in that group.

  • Sanna

    March 23, 2019 at 8:53 pm - Reply

    I was the 14th or 15th patient-participant in the first study visit, was adjudicated, and will be returning (as what looks like the 7th patient) for an abbreviated second study visit after the conference. I have to say, I was so surprised and impressed with my experience there. It was very rough, but Dr. Nath and his team (especially Dr. Walitt) made me feel cared for and safe throughout my 14-day stay with them. They did all they could to make me comfortable, while continuing the research protocol. It is a medical experience like no other.

    I am endlessly thankful to Dr. Nath and his team for doing this research. I am confident that there will be findings from this research that will move us forward, and I am looking forward to find out what they will share with us during the conference and once the study is complete.

    I am also always glad to answer anybody’s questions from a patient-participant’s perspective.

    • Cort Johnson

      March 24, 2019 at 12:57 am - Reply

      Thanks Sanna, Glad to hear the team is interested and taking as good as care as possible of the patients. I hope you can share how the second half goes after you are done.

  • Sanna

    March 23, 2019 at 9:00 pm - Reply

    @Tina: It was not just ‘one’ rare disorder but different issues they found that had not been identified prior by other doctors that were identified as likely being responsible for the symptoms of some patients. (Based on my conversations with the team while participating in the study.)

  • Aidan

    March 23, 2019 at 9:59 pm - Reply

    It could also mean that ME/CFS is actually something else altogether a possible mix of countless illness I would not be surprised that EDS is mentioned in April along with other ones as well

  • Anita

    March 23, 2019 at 10:27 pm - Reply

    I admire anyone who feels they can get through the rigors of the travel and the study testing elements. I’m only a few years too old (although would otherwise qualify), but can’t imagine how I’d do this. Thank you to those who have signed up, and thank you to the study principals and all involved.

  • Sanna

    March 24, 2019 at 12:18 am - Reply

    From a study participant: the first week actually was 10 full days of testing, and I was admitted for 14 days total (the article said one week). The second study visit is supposed to be even slightly longer. So, all together both studies would mean being admitted to the Clinical Center for about 4 weeks total.

    • Cort Johnson

      March 24, 2019 at 12:52 am - Reply

      Wow…That is an amazing commitment! Good luck with the second half 🙂

  • Sanna

    March 24, 2019 at 4:30 am - Reply

    Cort, I’m happy to share anything anyone is interested in. However, unfortunately my PEM state would not allow me to stay in the metabolic chamber on my own, and I would likely be crashed from the testing before the CPET, so I am only doing a very abbreviated second study visit.

  • Mark

    March 24, 2019 at 6:30 am - Reply

    Very frustrating to read that after decades of neglect, underfunding, and gaslighting, the NIH is now only studying people with apparent ME/CFS who have been sick fewer than 5 years. The rest of us who have languished with this awful disease longer are not worth studying, at least at this point. Nath doesn’t even provide guidance about what “rare diseases” (besides Parkinson’s) doctors in private practice might want to rule out.

    I would bet a large sum of money that the NIH will never make a concerted effort to study patients like me who have been sick a lot longer than 5 years. Maybe something will be learned by my autopsy…

    The other issue I have with the NIH entry criteria is that patients who have been sick fewer than 5 years are more likely to have rare diseases, simply because the evidence confirming some of those diseases can take years to emerge. In my first few years of illness, which had a viral onset and looked like ME based on the ICC criteria, a number of specialists felt it was too early to definitively conclude that I didn’t have something else.

    If specialists at New York hospitals are aware that some diagnoses are only made after watchful waiting, why is Nath studying people who have been sick only a year or two? At that point, it is too early to conclude that patients don’t actually have a paraneoplastic syndrome, an undetected malignancy, a mitochondrial disease, or a rare neuromuscular disease. I would argue that someone who has been sick for 5+ years after a viral onset who suffers with all the symptoms of moderate/severe ME/CFS who hasn’t died or been diagnosed with something else is more worthy of study than new onset patients.

    Instead, what Nath is going to conclude is that ME is too often a wastebasket and mistaken diagnosis, and that it would be better to funnel more research dollars into better detection of the rare diseases he is finding in his new onset subset of patients.

    • Cort Johnson

      March 24, 2019 at 2:21 pm - Reply

      You have a point but I actually think the NIH is going about this the right way. They want to catch the disease in its purest form – before it’s been complicated by comorbid diseases – hence the five year limitation. Even people with rare diseases are showing up hopefully they are catching most of them. I wish I had asked Nath if with the very rigorous testing process the patients were put through in the first half of the study – which were designed to catch anyone who might have something other than ME/CFS – if he expected to knock out a good portion of that first group.

      Once they have an idea what’s going on in those people they will apply that to the rest of us. Even though that process bypasses most of us in the beginning it seems like the most efficient and fastest way to go about finding out what’s going on in ME/CFS to me.

      We’ll see what the final findings are but although at this stage about a third of patients who made it through the first week appear to have something other than ME/CFS Nath is still getting the ME/cFS patients he needs for the study who will undergo the very rigorous second half of the study. That’s where most of the insights are going to come. Whether subsets will show up in that portion, is, of course, a huge question.

  • T Allen

    March 24, 2019 at 1:25 pm - Reply

    Any chance of getting an abstract of the paper you mention that Dr Nash wrote on Herpes and dementia? The link is to a “locked” site. Thanks!

  • Sanna

    March 24, 2019 at 7:50 pm - Reply

    Mark, I understand your frustrations, but I agree with Cort and think the NIH’s approach does make sense from a broad perspective. Whether this should have happened earlier in history or not, the NIH is beginning their research now and are starting with the beginning of the illness.

    I understand that studying the most severe cases seems most urgent, but studying the illness starting at the beginning of the illness makes sense in order to understand the whole illness. Some aspects, such as the immune system, deconditioning, etc. may change over the course of the illness. In order to understand such aspects, they should understand the beginning first and then go from there.

    The rigorous vetting of medical records and then 10 days of testing just to determine whether patients qualify is intended to seek out the “purest” samples as much as possible as far as I can tell. However, this does not mean the conclusions will only apply to those people. I think the intent is probably that purer samples will require less overall data, as it will be clearer and less muddled. So, hopefully, the most severe or long-term cases will benefit just as much as newer cases.

    This illness does have a history of neglect and many understandably feel that their frustrations have been largely unheard, but we need to be mindful not to direct our frustrations with the entire history on the few individuals now turning to this illness trying to help us. These brave individuals may not be perfect like all of us, and they may need to learn a lot still, but we do need fresh eyes on this illness and need to give them a real chance. They have not done a formal review of the current data yet but will do so once half of the anticipated patient-participant data is in, so we need to give them the time to collect and evaluate the data before giving out a lot of information not even halfway through the study.

  • Sanna

    March 24, 2019 at 7:56 pm - Reply

    Regarding not finding a lot of depression diagnoses in this patient group: That does make a lot of sense to me, as people who are truly depressed are probably much less likely to be reaching out to studies etc. Participating in studies takes hope and energy, both of which depressed ME/CFS patients understandably would have even less of. Plus, the longer you have been sick, the higher the depression rate would probably be. So, patients who have been sick for less than 5 years should probably have the lowest depression rate within the patient community.

  • Betty Mekdeci

    March 24, 2019 at 9:31 pm - Reply

    19 patients and 21 controls out of potentially millions affected. I am not impressed. Seizures and stroke patients left out. What if ME/CFC caused these conditions?

    Why didn’t NIH study patients from one of many clusters that have been reported?

    Selecting only patients who had a presumably post-infectious onset is very biased when many ME/CFC patients have reported toxic exposures prior to their illness.

  • Perrier

    March 24, 2019 at 10:04 pm - Reply

    Is the final report due in early April?

  • Cort Johnson

    March 24, 2019 at 10:08 pm - Reply

    Afraid not. I think we’re several years away from the final report. About 1/3rd of the participants have gone through the first half and about 15% through the second half.

  • Cort Johnson

    March 24, 2019 at 10:10 pm - Reply

    I think we would know if seizure and stroke caused ME/CFS in the short term – the ME/CFS experts would know that. The clusters happened so long ago that a) it would probably be hard to find those people and b) so much else has probably happened since then to them that it would be hard to figure out what is going on.
    The study is doing the next best thing by focusing on people with infectious onset – just as happened in the clusters.

  • perrier

    March 25, 2019 at 12:24 am - Reply

    Thank you Cort for you hard work; very much appreciated.

    What nags me is that 1/3 of the folks had some other disease; shouldn’t we be able to hear about that? What tests were done to find these? That is a high percentage.

    As for waiting “years,” well that is really tragic news, as the severely ill are suffering horrifically.

    • Cort Johnson

      March 25, 2019 at 2:33 pm - Reply

      Dr. Nath said he will report on the rare diseases found at the NIH conference in April.

      The study is taking a long time. It’s not unexpected but it is very frustrating! Hopefully we’ll have some news before it’s completed.

  • dejurgen

    March 25, 2019 at 9:02 pm - Reply

    @ T Allen:

    I think the link to link.springer.com/article/10.1007/s13311-018-00701-4 is linking to the abstract of dr. Nath’s article. I removed the front http:// part to get it trough WordPress filters.

  • Rose

    March 25, 2019 at 10:07 pm - Reply

    Thank you Sanna! Bless you.

    It’s very frustrating when you’ve been getting iller and iller for decades. Being ignored on top of that can feel soul destroying. I’ve only had this for 15 years but have already done the gamut of confusion, isolation, anger and despair – and back again!

    It’s a shame that we have no time machine and so can’t change what’s already happened. We all know it’s not fair to those of us who suffer and see no end. However, there’s a lot that’s not fair in this world – much of which most of us will never, thankfully, know anything about. At least we have this community and know we are taken seriously here. Thank you, Cort!

    All anyone can do is start from where we are. That’s what Dr Nath and the NIH are doing. So, as Sanna said, there’s no point venting our anger on the ones trying to find some answers at last. I do believe, as Cort said, the results will help the whole community, not just the recently diagnosed. And we must hope, like all reformers and campaigners before us, that those who follow us will have a better deal than we did.

    For centuries people died from simple, preventable diseases like measles – not any more. One day we will have the understanding we need to deal effectively with CFS/ME. So I say to all researchers everywhere, “Keep up the research, keep comparing results, keep digging, keep examining us, keep in touch!”

  • Jan

    March 26, 2019 at 10:57 am - Reply

    You can find Dr Nath Studies here:
    Herpes Viruses, Alzheimer’s Disease, and Related Dementias: Unifying or Confusing Hypothesis?
    https://link.springer.com/article/10.1007%2Fs13311-018-00701-4
    and

    Association of Herpes Viral Infections, Antiherpetic Therapy, and Dementia: Real or Alternative Fact?
    https://link.springer.com/article/10.1007%2Fs13311-018-0625-4

  • Aidan

    March 26, 2019 at 6:05 pm - Reply

    I am very surprised by a study this large that they in the same building have a test for (HATS) Hereditary Alpha Tryptasemia I now have the test kit being sent to me now hopefully next month if I can get a Doctor to sign the request form I can finally get tested & post the results on

    here, maybe someone here can ask the Doctor involved in this study to also test these patients for HATS even some carry the hemochromatoses gene some are Positive for both. I have seen cat scratch fever in others positive & what about Stratton Vanderbilt work on c. pneumonaie

    even the alpha-gal meat allergy some test positive to this as well…I cannot see this study going several years if they are already now halfway…I hope he announces the rare Brain diseases in April also I wonder why Dr. Ron Davis has not said what rare Brain illness his son has is it Stiff

    Person Syndrome or possibly biotin/thiamine deficiency genetics? Is East African Sleeping sickness a rare Brain disease?