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Symposium highlights new chronic fatigue syndrome research

Original post made on Aug 5, 2017

A community symposium with world researchers of one of the world's most puzzling diseases will take place at Stanford University on Aug. 12. Scientists will meet with the public to discuss the latest findings on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome.

Read the full story here Web Link posted Saturday, August 5, 2017, 8:49 AM

Comments (37)

Posted by Mark Silverman
a resident of Menlo Park
on Aug 5, 2017 at 1:40 pm

[Post removed.]

Posted by Sarah
a resident of another community
on Aug 6, 2017 at 2:35 am


what does this exactly mean?: "ME/CFS is a metabolic state designed to protect the body during a viral infection." does anybody know?

Posted by William Davidson
a resident of another community
on Aug 6, 2017 at 4:32 am

Bacteria use host ATP for their own energy needs, so presumably shutting down ATP production is an immune system protective measure to prevent them multiplying. It's probably controlled by the transcription factor, nuclear factor-kappa beta (NF-kB), which has many functions, including control of infections by pathogens which establish intracellular latency, and is also known to be chronically activated in a great many 'non-communicable' diseases.

I've reviewed research into illnesses that affect my family for 30 years. This resulted in the novel finding that the NF-kB driven immune response attempts to restrict cellular infection by 'closing down' receptors used by pathogens to enter cells. This response is often aberrantly activated in the absence of infection, and can take the form of reduced expression, reduced sensitivity and receptor blockade. This causes many diseases, depending on the affected cell type. When this is prolonged, cells may die, leading to advanced disease.

In the case of CFS/ME, Guillain-Barre disease, myasthenia gravis, Lyme disease, fibromyalgia and other diseases characterised by chronic fatigue, the receptor involved may be the acetylcholine NACH, which is seen to be blockaded by antibodies in myasthenia gravis. This disease is treated by acetylcholinesterase inhibitors, which increase acetylcholine by inhibiting its degrading enzyme. These drugs are also used in Parkinson's disease and Alzheimer's, and may prove useful in other chronic fatigue diseases.

Posted by Sarah
a resident of another community
on Aug 6, 2017 at 9:02 am

@ William Davidson: thank you very much!
Has there ever been a study with acetylchol.inhibitors in ME/CFS?

Posted by Erik Johnson
a resident of another community
on Aug 6, 2017 at 9:26 am

Web Link

Re: Is ME infectious?
Post by Erik Johnson on Fri Aug 16, 2013 3:14 pm

I'm a survivor of the 1985 Lake Tahoe epidemic, a graduate of Truckee High School, and a Holmes et al "CFS definition patient-study group" participant as a prototype for the new syndrome of "CFS"

We have had a few more minor outbreaks since then, but nothing like the huge "Mystery Illness" incident that sickened thousands of people.

This strange illness is full of bizarre contradictions.
At times spreading like wildfire through groups of closely associated people, yet with people from these very groups seemingly unable to transmit it to anyone else.

I saw a pattern immediately. A strange "exception to the rules" in which the flu-like illness turned from noninfectious to wildly contagious.

The contagion occurred when people in the early "shedding phase" of viral illness were all in the presence of moldy buildings, particularly ones with Stachybotrys Chartarum.
Only then, was the disease easily passed from one to another.

The Truckee "teachers lounge" incident that caused Dr. Peterson to call the CDC, starting the path to the new syndrome, is a very well described example of this process.

I contacted the teachers at Elk Grove, and they found the very same "toxic mold" that we in Truckee did.

The clues are right there. Simply ask yourself, "If this were a purely viral illness, then why did the one teacher who made the effort to get out of that lounge manage to avoid becoming ill?"

-Erik Johnson

Web Link
Clin Infect Dis. 1994 Jan;18 Suppl 1:S43-8.
Concurrent sick building syndrome and chronic fatigue syndrome: epidemic neuromyasthenia revisited.
Chester AC, Levine PH.
Georgetown University Medical Center, Washington, D.C.
Sick building syndrome (SBS) is usually characterized by upper respiratory complaints, headache, and mild fatigue. Chronic fatigue syndrome (CFS) is an illness with defined criteria including extreme fatigue, sore throat, headache, and neurological symptoms. We investigated three apparent outbreaks of SBS and observed another more serious illness (or illnesses), characterized predominantly by severe fatigue, that was noted by 9 (90%) of the 10 teachers who frequently used a single conference room at a high school in Truckee, California; 5 (23%) of the 22 responding teachers in the J wing of a high school in Elk Grove, California; and 9 (10%) of the 93 responding workers from an office building in Washington, D.C. In those individuals with severe fatigue, symptoms of mucous membrane irritation that are characteristic of SBS were noted but also noted were neurological complaints not typical of SBS but quite characteristic of CFS. We conclude that CFS is often associated with SBS.
PMID: 8148452 [PubMed - indexed for MEDLINE]

Web Link

"This seemed to be evolving, before our eyes, from a flu-like illness into something else"
-Dr. Paul Cheney

"... and it seemed to be spreading. Through the local hotel and casino, two area high schools, members of a girls basketball team."
-Dr. Nancy Snyderman

"That's when we wondered, Hey, maybe we ought to call somebody. This is really unusual."
-Dr. Paul Cheney

Osler's Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic
by Hillary Johnson

Page 28

1985 / Invitation to an Epidemic

"Until April, Paul Cheney and Dan Peterson had tried to believe they were dealing with sporadic, random cases of the malady described in the Annals*.
The teacher cluster shattered their fragile equanimity
"It all broke down--began to break down--when the epidemic began to be evident in May," Cheney said, "Because Jones and Straus never talked about an epidemic".

Posted by William Davidson
a resident of another community
on Aug 6, 2017 at 9:43 am

@ Sarah,

Not that I'm aware of, sorry.

I had a quick look on PubMed, and this is all I found:

Web Link

Posted by Johan
a resident of another community
on Aug 6, 2017 at 10:40 am

"drug, an antiviral called retuximab, doesn't work for everyone, although it does work for some patients."

Rituximab is not an antiviral drug, it is a selective immune supressor which targets B-cells.

Posted by To Mr Davidson
a resident of Old Palo Alto
on Aug 6, 2017 at 11:31 am

If ATP production is curtailed during a bacterial-- and presumably, a viral infection-- does this account for the deep fatigue and increased need for sleep during those infections??

Posted by To Mr Davidson
a resident of Old Palo Alto
on Aug 6, 2017 at 11:52 am

To Johan: You are on the right track....I have taken infusions of rituximab ( trade name Rituxan).

It is best known as a TNF inhibitor, used currently for rheumatoid arthritis, Crohn's Disease and aggressive ulcerative arthritis not controlled otherwise.

I was on this medication for a year for RA; it worked well.
However, my insurance company changed its coverage mid-year, without my knowledge, from 100% of this infusion to 70%, and I could no longer afford $16,000/month copay for it. Same thing happened with Remicade.

Since both are biological drugs, in the same class as Enbrel, Humira, Simponi, Actemra, Cimzia, Stelara, etc, it is not easy to reproduce. This is why, even though Enbrel, Remicade and Humira are fairly old drugs, there are as yet no generic versions of them. Expensive to produce, the generic form may not be very much less costly than the originals!

Posted by William Davidson
a resident of another community
on Aug 6, 2017 at 11:52 am

@To Mr Davidson

That might well be at least part of the reason for general tiredness, although I should emphasize that reduced ATP production in infected cells as an immune response to prevent pathogen multiplication is a personal hypothesis. Does seem highly plausible, though. I'll need to do a search to see if it has been proposed by others.

Posted by a chronic fatigue sufferer
a resident of Barron Park
on Aug 6, 2017 at 11:09 pm

My profound thanks to Ronald Davis and his assistants for all the work you're doing; please keep going.
And my deep sympathies to Whitney.
Bless you all.

Posted by Thanks, Erik/William
a resident of Fairmeadow
on Aug 7, 2017 at 11:20 am

Thanks, Erik/William for the insightful comments. Erik's comments especially show the dangers of moldy buildings, and it is imperative that we in Palo Alto work hard to eliminate such toxic buildings and get them torn down to improve our community health. Too often, we see cheaply built houses around our neighborhood with visible mold, and the City should encourage all residents to eliminate these sick buildings to reduce chances of similar epidemics.

Posted by Pam
a resident of Charleston Gardens
on Aug 7, 2017 at 2:04 pm

In the infectious Diseases department at Stanford Dr. Jose Montoya has been researching, and treating patients with Chronic Fatigue Syndrome for more than 15 years. He has had success, and if anyone wants to see his grand rounds lecture on CFS, just watch it on youtube.

I believe he uses a combination of anti-virals. I am not a doctor, just someone who's niece he cured of this terrible disease. Although CFS is less controversial than it was 15 years, Dr. Montoya truly broke ground by BELIEVING his patients and considering carefully all of their symptoms. He has done studies at Stanford looking for evidence of viral involvement and continues to innovate research and care in CFS.

If you know someone with this dreadful disease, or have it yourself, go to the youttube video, Jose Montoya MD Stanford. Life-changing!

Posted by Complexity must be addressed, too
a resident of Another Palo Alto neighborhood
on Aug 7, 2017 at 2:35 pm

First, my heart goes out to Dr. Davis’s family, and I am grateful for the contributions to medicine that will surely come from this work.

I think any novel approach is a good thing, but I also think it may be counterproductive to assume that ME/CFS is one problem. Multiple causes may involve the same pathways for fatigue. The current medical paradigm is simply better at acute and uncomplicated diseases than chronic, fluctuating, and complex diseases. That is well known and no mystery, and much has generally been published over the years about that issue alone.

I remember seeing a medical publication 20 or 30 years ago, in which the authors proposed that CFS was undiagnosed Lyme Disease, based on the responses in a blinded treatment study, I'm not suggesting that's the answer, I'm pointing out that the work was fairly well done and went nowhere, and since then, there have been all manner of different studies that have pointed to other credible underlying causes. One study from Harvard? was supposed to be a watershed, too, since the researchers very carefully excluded anyone with a different diagnosis - what was shocking was just how many of the CFS patients referred had other, diagnosable medical conditions when someone looked more carefully.

I'm again not suggesting that there isn't something unknown here in need of solving, I'm suggesting that assuming there is just one condition at issue, and using traditional epidemiological methods (only) is probably unhelpful. What if all these different researchers are correct in the limited context of each circumstance or study? But no one ever gets to an answer that helps patients in general because the overall approach is the problem? Given how poorly the paradigm deals with complexity relative to complicated chronic conditions, especially where quality of life is concerned, I think it's unwise to discount that possibility. In other words, the quest for The Answer has gone on for several decades now, and this isn't the first credible attempt to establish biomarkers. Yet we don't seem any closer. This work is still important, but I don't think anyone should hold their breath about finding THE mystery cause, other problem solving approaches are probably needed, too.

@Erik Johnson, your post is a good case in point. I don't know how representative or accurate your statements are, but you bring up an important point from environmental science. The environmental science consensus (the majority of scientists in the field/consensus-level research) on environmental circumstances related to dampness or condensation and building materials is that these environmental conditions increase the susceptibility to all infectious diseases among occupants. There is a higher incidence of infections going around among occupants of such spaces (with certain kinds of dampness problems). That's a well-established fact. The consensus is that the health impacts in occupants is not well correlated with the presence of one species of microbe, as you have indicated, but rather correlates well with the presence of persistent water in contact with building materials, which may encourage the growth of many microbes and their byproducts - we don't yet know what causes the symptoms.

Chasing one microbe or fungal cause for health effects in occupants turned out to be fruitless overall even though there were many individual studies showing one thing or another may have been more prevalent in the environments tested. From a systematic standpoint, though, such investigations demonstrate no consistent correlation with health impacts in occupants, rather, the presence of the underlying dampness - the water - does closely correlate with health impacts. And luckily, the environmental solution to preventing such illnesses is straightforward, although not necessarily easy - and unfortunately, despite the strength of the environmental health science, is typically ignored and misunderstood, including among most physicians who don't consider physical environments their purview (and again, don't necessarily have a good process for helping patients in those situations).

In the watershed book Bad Blood, about the Tuskegee Syphilis Experiment, the author points out that while racism is an overarching issue, the reason the over 400 men who were enrolled in the study and observed for decades without treatment were not given antibiotics when they became available in the ‘40s was because the researchers had decided from the outset that it was okay not to treat the men — that was a medical decision more related to the lack of urgency the medical profession feels toward certain disease problems with more chronic quality of life-degrading course. In the ‘30s, the study was originally a treatment study with the dangerous treatments of the day, but the researchers lost funding so they decided to make it an observation study. In so doing, they became fundamentally comfortable with the idea that it was okay to leave patients with such a disease untreated. When antibiotics became available in the ‘50s, they were viewed as unproven and with potentially serious side effects. The doctors in the study had already spent two decades comfortable with the idea that it was okay to leave syphilis untreated, why would they jump on a new and unproven therapy, especially since treating late-stage syphilis is fraught with downsides.

This same situation is playing out today with many diseases such a Lyme disease, caused by a similar microbe, and often mistaken for CFS. The paradigm of medicine is simply not set up to deal effectively with these kinds if chronic illnesses. One has only to look at the Lyme treatment controversies to see the conflict between those who are comfortable leaving such a disease untreated until all is known and clinicians who are not and believe the complexities of such diseases requires a heuristic approach and a careful view of response to treatment (i.e., treatment of individuals over the longterm is complex and they look for indicated ways to produce high effect size outcomes). Even Lyme disease is often really not just one disease, tickborne diseases can be very complex, and antibiotic treatment, just as with syphilis, is fraught with downsides.

My point is that a combination of poor processes for helping patients with chronic diseases, and a complacency about such diseases, are probably as important to address urgently as developing such important new science.

Posted by A resident of
a resident of Stanford
on Aug 7, 2017 at 3:37 pm

If you examine the histories of CFS/ME patients closely enough you will find that all of us had vaccines before becoming sick. @Erik: there is definitely a well-recognized interface with moldy buildings and the immune injury caused by vaccines. Some term it CIRS. Chronic Inflammatory Response Syndrome. There are other causal factors as well, including latent Lyme disease infection at the time of vaccination. See Dr Rao's work from Perecelsus Institute. It's also interesting to note that the co-morbid conditions found in those with CFS/ME are also the conditions caused by vaccines. See the body of published work of Shoenfeld MD showing the connection between vaccines and most autoimmune diseases. In fact, the ONLY known cause of autoimmune disease is vaccines. They don't "just happen." It's also easy to find published studies showing how vaccines disrupt mitochondrial function. Essentially, what Davis has discovered is the first test to determine if someone is vaccine-injured, which I'm certain is why his funding was pulled. If you care about those who are disabled by these diseases, please contribute to the private funding he is seeking. We are ALL at risk since most people have no idea vaccines are more harmful than we've all been led to believe. If you feel inclined to flame me for voicing a very unpopular idea, just know that your cognitive dissonance is raging. The teaching will come when the student is ready. I'll respond to rational and calm comments only, and not to ad hominem attacks. Just be open enough to learn without your biases getting in the way.

Posted by Complexity must be addressed, too
a resident of Another Palo Alto neighborhood
on Aug 8, 2017 at 8:29 am


"f you examine the histories of CFS/ME patients closely enough you will find that all of us had vaccines before becoming sick. "

This is factually incorrect. You may have something of value to say, but it's hard to see that when you lead with something so sweeping and unsupported by scientific evidence.

In any scientific review of evidence, it is as important to review contradictory evidence - evidence that refutes the evidence you believe - as much as it is to gather supporting information. When you speak with such certainty with no evidence ("I'm certain this is why his funding was pulled" - I don't think even Dr. Davis would agree) you undermine any otherwise valid points you might make.

Posted by A resident of
a resident of Stanford
on Aug 8, 2017 at 4:29 pm

@Complexity Must Be Addressed Too: How do you know what I wrote is factually incorrect? While it's true that there are no peer-reviewed published studies on vaccinated vs unvaccinated people with CFS/ME, I provided resources, but you didn't follow them. There is plenty of biological mechanism evidence of vaccines causing the type of injuries found in those with CFS/ME. Find us some unvaccinated people or unvaccinated Amish with CFS/ME. My bet is there aren't any. Some call CFS/ME "Adult autism" - the difference being the brain wasn't developing when the injury happened. The immune injury is very similar. As in Autism, a true vaccinated vs unvaccinated case:control study of those with CFS/ME has never been done. MDs aren't even collecting the data about the vaccination status of those with CFS/ME, but if you are in a waiting room with a group of them, it's really quick to determine if someone had vaccines before falling ill. Usually they recall they went on a trip, then recall they had vaccines before they left. The biological mechanism science coupled with robust anecdotal evidence is enough of a smoking gun to test the Hypothesis with a case:control study or at least an epidemiological study with tertiles of those with no vaccines, some vaccines, many vaccines. Davis' test is objective evidence of mitochondrial injury, which is a side effect of vaccines. Wake up. You could be next. Read the package insert on your next vaccine and you will be shocked.

Posted by Complexity must be addressed, too
a resident of Another Palo Alto neighborhood
on Aug 9, 2017 at 9:21 am

Your very description evidences your lack of understanding about how scientific facts are established.

Why do you assume I have no first hand or scientific knowledge? When you say "all", that's a high standard, and yes, even my anecdotal observations over the last three decades refute your contention, as well as my broader reading of literature. Why should I follow things further when your arguments are so tenuous and scientifically unsound in and of themselves? Go learn how science works and maybe people will take you more seriously, And no, a potential plausible mechanism and some anecdotes is not strong evidence. As for whether "MDs" are looking, I think there have been some thorough looks at exposures over the years. Without wasting anymore time on this, I think there may have been a study cited in Osler's Web (I am reaching into memory here, so this may be wrong) that looked at all exposures to see what patients had in common, and I believe they looked at vaccination. The one thing the sick group had that was different than the healthy group was a higher rate of acquaintanceship with each other. I can't remember enough to be certain on that one, but I suspect there is no strong evidence - and certainly not my own anecdotes that refute your contention - that would change your mind. Do I think some people*could* get sick in ways that are yet to be appreciated after vaccination? You might be surprised to hear that yes, I do, based on reading literature and understanding what has and hasn't been done. But there is plenty of contradictory evidence if one wants to contend that this causes ALL CFS - there is too much contradictory evidence refuting your contention about ALL patients. And no, I am not going to engage further on that issue with someone who so clearly lacks an understanding of how scientific facts are established.

Have you been open to the possibility that ME could be many things, and that sticking with the idea that it's one thing may be why it as a disease problem has not been solved? I think there is far more evidence for that over the hears than of any relationship overall to vaccination.

Posted by question
a resident of College Terrace
on Aug 9, 2017 at 10:50 am

Are there antibodies to particular bacterial epitopes in the serum of patients with ME/CF that cross-react with mitochondrial epitopes? If so, this might lead to damage to their mitochondria, and therefore ATP production.

Posted by A resident of
a resident of Stanford
on Aug 9, 2017 at 9:21 pm

@complexity: Absolutely CFS/ME is multifactorial, and I'll go into some of the possible factors below. And, I agree that peer reviewed published studies would be the best evidence, but how do we get there without anecdotes and biological plausibility first?

I note that you need to attack the idea of studies that need to be done. What is wrong with case control studies? What is wrong with epidemiology? The latter is how the CDC studies vaccine safety, believe it or not.

I read Osler's Web as well, a long time ago. We know a lot more now.

Have you read Plague by Mikovits and Heckenlively? They describe the origin of the first reported cases of CFS in the mid 1930s among nurses and doctors in an LA hospital. None of the patients got sick. What did the nurses and doctors get that the patients didn't? An experimental polio vaccine using mouse brain. If you come back and say Mikovits' XMRV research has been discredited, you are more naive than you think you are. A murine retrovirus may be at play in CFS, per her fine work.

We can assemble a few more basic puzzle pieces on the autoimmunity side as well. Shoenfeld et al have proven vaccines cause autoimmunity. Published studies show Rituximab - which kills B cells - will temporarily reverse CFS in more than half of people, leading the researchers to conclude that CFS may be autoimmune.

Aluminum in vaccines is implicated in a variety of conditions, including CFS. And Al is directly implicated in mitochondrial dysfunction (Kumar, 2014) "In this review, we have discussed the oxidative stress and mitochondrial dysfunctions occurring in Al neurotoxicity."

Mercury in vaccines is another concern for mitochondrial function. Hg depletes GSH (glutathione) which causes mitochondrial damage. (Nicole et al, 1998)

There is also the idea of a permanent immune system activation in the brain, as explained by Handley in an article called, "Did Chinese Scientists find autism's missing puzzle piece."

There are many other factors as well, but these are among the most obvious. We don't know what the "perfect storm" is for CFS, but from what I know vaccines are a huge part of it, and it's sad to me that we won't look at the most obvious modifiable risk factors because people think it will shake public confidence in vaccines.

I don't do bench science for a living. I do pay attention and assemble the puzzle from the pieces we do have.

Posted by Sarah
a resident of another community
on Aug 9, 2017 at 9:38 pm

and what if ME/CFS is caused by a derailed autonomic nervous system as some claim (A.Gupta, Gabor Matè,...) and that causes all the bodily disfunctions (including a not well functioning immune response)?

Posted by Complexity mist be addressed, too
a resident of Another Palo Alto neighborhood
on Aug 9, 2017 at 11:13 pm

"They describe the origin of the first reported cases of CFS in the mid 1930s"

It's hard not to have read about that if you follow CFS. I think there is no way of really knowing whether that was "CFS" (asuuming CFS is one thing, and I think it more likely is not), or whether we are just using CFS as a giant trash can still. Given how poorly things like Lyme and other tickborne diseases are dealt with, after decades, it's hard to see that the needle has moved on approaching this and similar chronic conditions better. Medical training is such a physical gauntlet, it's easy for MDs to think patients are just malingering. In several decades, the profession hasn't even come up with better words to describe the fatigue that is so much worse than anything a normal person can imagine even from medical school.

I am trying to take you seriously and tell you what you can do that might help. Learn about how science works. Be willing to look at all evidence and not just what supports what you want to believe. Spend as much time pursuing evidence that fundamentally contradicts what you believe. When you speak with such certainty about things you cannot know (such as why Dr. Davis lost his funding), it undermines your credibility, and gives wind to people who want to claim CFS patients are just mentally unhinged. No kidding you aren't a scientist. But you could learn to be scientific in your approach. You can clearly write; people would listen better if you did.

Posted by A resident of
a resident of Stanford
on Aug 10, 2017 at 9:52 am

@Complexity: If your main issue with what I've shared is that I don't consider the other side, I have and was down that path for two decades before the evidence-based epiphany that it was as simple as looking at one modifiable risk factor, vaccines. I do absolutely believe there are co-factors.

Anyway, we have you and everyone else on here to describe the "other side," as you call it. I guess the "other side" is that vaccines don't have a role at all in CFS?

@Sarah: dysautonomia is part of CFS, and a side effect of vaccines, and possibly linked to autoimmunity. "Many reports have described the occurrence of dysautonomia, orthostatic intolerance and POTS following febrile illness, presumably viral and post-vaccine." (Rusieh, 2017) I refer you back to Shoenfeld et al for the link to vaccines and autoimmunity.

For someone who supposedly doesn't understand the scientific process, I can see that we are stuck in a scientific paradigm and that an emerging paradigm is being attacked. (Kuhn)

And, you must think otherwise of me, since you continue to engage with me after you said you wouldn't "waste more time" posting here. I bet we'd be friends offline. :)

Posted by veronica
a resident of another community
on Aug 10, 2017 at 10:22 am

A resident of Toronto Canada.

I came to this forum via a link from an article posted by CTV television news in Canada.

I was 44 years old when I was hit with this devastating illness. I am now 73 years old. I am sorry to say that this condition does not go away.

Yes, it does improve, however, it can hit again at any time and at it's own convenience. What triggers it? God only knows. You can be feeling better and hours later you are flat out on your back again for days.

I spent thousands of dollars trying to get diagnosed and treated.
I worked through the first couple of years with it, slowly getting worse until I could no longer even get out of bed.

I have been to hell and back with this illness.
Seen uncountable docters-Allopathic, Naturopathic, Homeopathic.
Acupunturists, Therapists------etc etc etc.
I have been laughed at, scorned, and told it is all in my head.
I even as a last resort, spent 2 weeks at the Donsbach Clinic in Mexico.

The story is too long and ugly to tell all in this post.

Yes I was in Lake Taho a little later than the outbreak date, and yes I had a hepatitis A vaccination shortly before this condition reared it's head.
I have always told the docters that I felt there was a chemical imbalance going on.The response was always a glazed over look fron the doctor.

For the last 10 years I have stopped even trying to tell physicians that i have CFS/ME.Since in Canada it is still a stigmatized illness.

I sincerely hope that Mr Davis is successful in getting the funding he needs and more, to finally help all of us that are silently devastated.
It seems that 5 million dollars is not enough to improve the health of 3 million Americans,add to that the other millions all over the world and 5 million dollars sounds very little.

I wish Mr Davis all the best luck there is, in raising what he needs.

Posted by A resident of
a resident of Stanford
on Aug 10, 2017 at 11:31 am

@Veronica, I'm devastated reading your story. It rings true for most patients dealing with CFS/ME. The physical torture and loss of careers, income, marriages, savings. All of it. But, the worst part of all, is how people with CFS/ME are still treated.

If you haven't already looked into the biomedical treatments/functional medicine treatments that are working in those with autism, use that as a guide. They work for CFS/ME as well. Is Donsbach clinic still open?

My heart goes out to you for continued recovery.

Posted by veronica
a resident of another community
on Aug 10, 2017 at 1:11 pm

Hi resident of Stanford,

I don't know if the Donsbach clinic is still open.
Honestly, it did nothing for me, except get me out of my environment.

Yes, the losses are massive, aside from one's health.
I will definitely look into the biomedical aspect with my GP.
The battle is always convincing them to give you a referral.

Just a note: I have been taking LDN (Low Dose Naltrexone)for about a year,
and it definitely helps with energy levels.I'm sure you know about it.
Thank you for responding.

Posted by veronica
a resident of another community
on Aug 10, 2017 at 2:23 pm

For complexity must be adressed too.

I don't know if you will return to this forum-Hopefully you might see this.

For years (28 to be exact) I searched for the best words to describe my fatigue and how it felt. I used to say it felt like living inside a giant dirty Jam Jar and screaming to get out---But nobody could hear me because my voice had no sound.

Only recently I found a description by another CFS sufferer, who described it in this way.

It is the same drugged feeling that you experience after having General Anesthetic, and you are fighting to come out of it. Except it goes on nonstop for years.I have used this description since I found this person's feelings, as that is exactly how it feels for me. A

Someone also stated that the so called experts who wrote these reports should only qualify to critique this illness if they have been diagnosed with the illness themselves and have experienced at least 2 years of CFS/ME.
Would they be as flippant about it after their own experience?

Posted by Anne
a resident of another community
on Aug 11, 2017 at 6:45 am

I'm grateful to all the participants of this conference for fighting the good fight on our behalf - thank you!

And I'm grateful for the comments left here by patients - some of them are ticking boxes for me, and I've found your comments illuminating.

When I look back, I can spot each time my health suffered a hit and started to degrade; it didn't happen gradually in a smooth linear downward gradient, but dropped in steps.

First step:
a) I'm a victim of childhood abuse, which I'm reluctant to mention because of the already severe stigmatizing of patients (ME/CFS/Fibro/MUS or otherwise) with the label of 'psychosomatic' illness who are therefore considered to have a psychological issue (often 'malingering') instead of a physical one. But since there IS a significant percentage of people with ME/fibro/etc... with CA histories I think it's important not to overlook this. What I WILL say is that those 'researchers' stuck on the 'it's all in your head' approach are obviously unfamiliar with the extensive CDC ACE study which overwhelmingly proved the connection between childhood adverse experiences and negative adult health outcomes - including cancer, heart disease, COPD, liver disease, and on and on ad nauseam. When Dr. Felitti first presented his early findings to a physician's conference he was mocked and told 'don't you know those types of patients lie to you?'

b) I was also diagnosed with celiac as a child

Second significant drop in health:
c) I developed IBS and thyroid problems as a teen

Third significant drop in health:
d) I had two Dental Crowns put in in my 30's, one of which gave me constant problems, which continue to this day despite several investigations into it. I developed metal allergies at that point (gold rings would turn my fingers black, etc...). I was working in an extremely demanding job (that I absolutely loved) but started to become less able to keep up.

Fourth significant drop in health:
e) I was transferred to a dept. which had been temporarily moved into a new location deep in the basement of a large office tower. One of my co-workers came to my desk and told me "You know, everyone who sat in that location became ill." He said they'd had /environmental people' in to assess it before but never found anything. I thought he was just being silly and disregarded him. My cubicle was just under the air intake for the floor.

f) A month of two after that my employer encouraged everyone to get the yearly flu shot, which was being given for free at our City Hall just down the block. After the shot I immediately became very ill, like I'd developed the flu itself quite badly. Sharp pains all over my body, total complete exhaustion, concentration problems, dry chest cough: figured perhaps I'd picked up a strange flu from someone in line at the clinic. I know vaccines are a contentious issue, but I mention it here because it was at this point that things really degraded for me and went drastically downhill. Between the vaccine and the new building I became significantly ill and new symptoms developed: had a couple of episodes of anaphylaxis (unknown origin), facial flushing, chest pain and constant low grade cough. I took a new job which was much less demanding, thinking it was stress and burnout, but my symptoms didn't abate.

g) We moved into a house that we now know had significant water damage, but at the time we didn't. At that point my symptoms started degrading linearly. Not understanding what was going on and thinking I was ill from burnout I quite my job for a few months (or so I thought) so I could rest and recuperate. I never did. 8 months later I was hospitalized three times with pleuropericarditis and have been severely incapacitated ever since. They could never find a cause.

h) at that point I was diagnosed with fibro/CFS.

Sorry for the long story here, but I'm wondering how many of these types of things other patients have seen, and hope this may spark some thoughts (as previous posters did for me). I hope the researchers will start assessing these things in the patients they research or treat. I've yet to see anyone really take all this into account in terms of their impact on my disease burden, and yet when I look back I can see that each of them precipitated a significant change to my health.

I hope Dr. Davis' funding is restored &/or he finds an alternate source. Thank you again to everyone at the conference who are working towards defining and corralling this disease, and hopefully finding a cure!

Posted by YelKaeye
a resident of another community
on Aug 11, 2017 at 8:16 pm

Thing is, the smart patients have intelligently worked this all out now. And in fact it is they (the patients) who call the shots now and not the doctors nor the researchers either. But the patients alone.

I have been on antiRETROvirals now for about four years for Adult ME/cfs which I had had for 20y following on from MMR/polio vaccine shots as a teenager. My understanding is that the vaccines are made in the same place where research is done on mice and so mouse dna can get into vaccines that way rather than mouse tissue being used to make the vaccines, though this was also the case at the very beginning of vaccine manufacture apparently.

Mikovits sadly was right.
And about 1500 scientists were wrong.
The proof is the increasing number of patients better on antiretrovirals.

Viread+Raltegravir in my case. Cured of ME. It's GONE.

Harvey Alter tried to smartly get the message out but he was reduced when under pressure just like Mikovits was.

Mikovits is a hero.

Posted by Sonya Jones
a resident of Adobe-Meadow
on Aug 14, 2017 at 10:34 am

One thing that will sound crazy, but def is 'something'. Nearly everyone in all my CFS SUPPORT groups are 'highly sensative' people! Just a thought. Im lucky I don't suffer pain, but stuck in a body that just wants to sleep 24/7. 11 yrs now. I self medicate and can function up to 70% now. Methamphetamine saved my life. Worth trying for Whitney I reckon. (Pls don't judge me) I said I'd try anything to get better and I have improved on this. Thanks

Posted by A resident of
a resident of Stanford
on Aug 14, 2017 at 4:24 pm

How interesting that 4 of the patients who posted here said a vaccine had contributed to their rapid decline. Occam's Razor, docs. Quit looking elsewhere. The immune damage from vaccines is the lynchpin in the entire thing. Forget complexity until you figure out exactly what these vaccines do to the immune system to cause the Sx of CFS/ME. And, if you really want to help patients you'll find a way to fund this type of research, without the help of big pharma or government grants. If you just want to keep your jobs, keep looking elsewhere.

Those who developed pre-CFS symptoms when younger, please look at your vaccine schedule if you can find it, and note the temporal relationship between childhood vaccines and onset of those Sx. For those who became sensitive to mold, it's possible vaccines caused the sensitivity, or maybe vice versa. No one knows ... yet. But we will soon enough. There is a toxicity component as well - an interaction between vaccines and toxicities beyond mold. We need more info here, as well.

In the meantime, I suggest Dr. Davis test mitochondrial function in children with autism, PANDAS, ADHD, dyslexia, autoimmune disease, etc. Ideally, in a retrospective study, he'll test cord blood in any children who have it banked, to see if the mitochondrial dysfunction was innate or acquired. The big question is: when was it acquired? We must know. A prospective study testing cord blood for mitochondrial dysfunction, then drawing blood sequentially in children as they grow up would be ideal. Those results will be very, very interesting.

By the way, @complexity had some comments about my understanding of science. I see how I mistyped some information regarding a suggested study in a previous comment. Appreciate him/her pointing that out.

Posted by Sonya Jones
a resident of Adobe-Meadow
on Aug 14, 2017 at 7:09 pm

My CFS doesn't seem vaccine related. I did however get bit by a tic when I was 8 or 9yrs old. Went on a school excursion that day and I remember the government bus was literally infested with tiny black bugs and we could see them running up and down the centre aisle.. In hindsight, I wonder how many other kids in my year got bit that day and how many are suffering like me? I only heard of Lyme's disease a few yrs ago and tested positive to a test my natropath did.. But my CFS happened after getting Glandular fever 2 x and also that other Gillard Barre syndrome (sorry can't find how its spelt, guessing!) First time I got GF I had insomnia for 13 yrs.. Barely slept a wink, 2nd time slept so deeply I had to be woken and made eat or I wouldn't have. Had chronic brain fog and eyesight deteriorated and chronic sugar cravings. So wish someone could price it all together.. I miss living ..

Posted by Peter Carpenter
a resident of Atherton
on Aug 14, 2017 at 8:19 pm

Peter Carpenter is a registered user.

Correlation is not causation.

Given the high vaccination rates in the US anything could be correlated with vaccination but that does not establish causation. Almost all of those same people drank milk and ate candy but neither has been shown to be a cause of CFS.

Posted as a CFS "survivor".

Posted by Sarah
a resident of another community
on Aug 14, 2017 at 11:10 pm

@Complexity must be addressed, too:

Can you say more about that?: "...("I'm certain this is why his funding was pulled" - I don't think even Dr. Davis would agree) ...."

Posted by Complexity must be addressed, too
a resident of Another Palo Alto neighborhood
on Aug 15, 2017 at 12:31 am

"Complexity: If your main issue with what I've shared is that I don't consider the other side, " No, it's not.

I think you are motivated to help and come across as intelligent, but until you decide to understand how science works, you will continue to come across as a crank. You are missing the point, and no, it's not just one thing, it's like you are trying to speak a language and have no idea how badly you're doing it. It doesn't mean you are dumb that you don't get it, but you do need to learn how it works to become more effective. I have no issue with you, it's just really obvious that you do not understand how science works. It would be like Sophia Vargara asking how I know she is not a native English speaker and is my main issue the way she pronounces her R's. You made it obvious in so many ways. The summary is, this is not a language you speak well, but that doesn't mean you can't. That's not me having an "issue" with you, I don't know you. But the way you talk feeds the negative impressions, when that's the last thing patients need. Many technical people don't understand science, being broadly in technology isn't the same thing. You started this thread expecting to be flamed; I'm trying to give you more than a hint of how to change that and be more effective.

Dr. Davis's work is important science. I hope he is able to help his son, and everyone suffering.

Posted by A resident of
a resident of Stanford
on Aug 24, 2017 at 1:44 pm

@Complexity, you can't play T ball and claim you bat 1,000. I never posed as a scientist, just as Sophia Vergara never tried to pass as a native English speaker. I.e. you can't set up a false statement for yourself and then take a whack at it, as if it's true. You could see from the beginning I'm a patient. A patient who has been deep in the medical literature for two decades. A patient trying to figure this out, figure a *way out* to have a more productive life. To that end, I do focus on possible causal factors, even if they are impolitic.

Dr Davis' research is most exciting because it is so cheap and quick, and it seems highly specific for CFS/ME. What I'm sure we'd all love to know, is what would happen if other patient populations were screened with this test. Would there be clusters of people who all have citric acid cycle impedance issues? Would those clusters lead us to new understandings of how certain diseases are related to each other? E.g. If only people with CFS/ME and autoimmune disease tested as having citric acid cycle defects, that would be another clue that CFS/ME could be autoimmune. (Another clue being the studies on Rituximab & ME/CFS.) I'm sure we'd all like to know the etiology of citric acid cycle defects as well. If we know what causes the defects, we can avoid those risks, and we may be able to repair the damage, though I also think citric acid cycle defects are just part of the malfunction in ME/CFS, so just repairing the citric acid cycle is unlikely to be a cure on its own.

As I said above, my highly informed opinion is it will all lead back to vaccines. And I say that with my own authority, here, in the comments section in a city newspaper, not as an author of a peer-reviewed published study in the NEJM. Don't shoot the messenger because you don't like the message or how it was delivered. We are neighbors and should treat each other better.

Posted by Complexity must be addressed, too
a resident of Another Palo Alto neighborhood
on Aug 24, 2017 at 3:17 pm

@A resident of,
I think I have been polite to you and even offered compliments where I thought they were due, and it is not "shooting the messenger" to offer you helpful advice when you have yourself indicated that your perspective is received with less than the welcome you wish. I have never suggested you misrepresented yourself as a scientist, you have asked me questions such as "How do you know what I wrote is factually incorrect?" and rather than being sucked into a meaningless time sink of specifics (that would likely come across to you as an attack anyway, since your reaction indicates on some level you feel that anyone who disagrees with you is in some way attacking you, and someone fact-based who wanted to engage with you would really rip your points to shreds), I have tried to answer your questions in a more general, honest and nonpatronizing way, considering that it is so evident that you aren't familiar with the scientific process yet you hold very strong opinions that you believe are "highly informed". I am letting you know that you sound like someone who is unfamiliar with a language claiming to native speakers that you are native, too - that was not to suggest that you are claiming to be a scientist, it is an analogy to help you understand how you come across to others with your strong claims such as saying you are certain Davis's funding was pulled because (you wrote) this is the first step in determining whether someone is vaccine injured.

I think there is value in what you aspire to do, but it can be counterproductive if you come across as a crank for lack of any understanding of how science works, and you will be less effective, because the nature of such a "trash can" illness (not saying CFS isn't valid, but meaning the de facto use of the diagnosis to cover anything similar that doctors don't want to deal with, including mental disorders) means remaining so oblivious to how science works will get your points dismissed with the many actual cranks. Scientists in all fields get plied with all kinds of crazy stuff - the classic example being perpetual motion machines - that (at least above absolute zero temps) are not possible, and if someone proposing such a thing demands to know why one knows they are wrong, one can try to educate people in basic physics and take a lot of time with specifics, or simply suggest they take a class to understand basic physics.

I am coming to this from the patient perspective, too, and am only trying to get you to improve your approach so that you don't add to the crank cacophony, which only hurts legitimizing the search for answers.

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