Ron Davis has been wanting to bring experts in from around the world to collaborate on ME/CFS every since he got started in this field. Next week it’s actually happening.
The Open Medicine Foundation is going to give the ME/CFS Community a first look at their findings (those they can talk about :)) during a Community Symposium on Saturday.
It’s going to Livestreamed for free, DVD’s will be made, and if you’re actually in Bay Area get down to Stanford if you can and meet Ron and his group of experts. It’s definitely the place to be this summer.
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Keeping up with the latest research in ME/CFS, long COVID, fibromyalgia, and allied diseases. Exploring new treatment possibilities. Learning how others have recovered. All in as thoroughly and comprehensively as we can.
Please support Health Rising during our quickie summer donation drive. Our goal is to raise $15,000.
Here’s the big Mark Davis, Jarred Younger, Montoya et al study mentioned above:
Cytokine signature associated with disease severity in chronic fatigue syndrome patients
“On average, TGF-β was elevated (P = 0.0052) and resistin was lower (P = 0.0052) in patients compared with controls.”
I’m excited to say that my rheumatologist has been testing for, finding, and treating elevated TGF-beta in his MECFS and fibromyalgia patients for years. I’m doubly excited to say he will be making the trip to attend the symposium. I really hope many of the speakers and researchers stick around to talk to people at the reception.
Personally, I can say my TGF-beta levels fluctuate in step with my symptom severity. Quest Diagnostics offers it as one of their blood tests:
Sorry for late reply, I thought I had notifications on. (Only saw this because I circled back post-symposium.)
Anyway, the only drug he has me on is LDN. He treats elevated TGF-beta by correcting nutritional deficiencies, toxin exposures, and microbiome imbalances that cause it to spike in the first place. I’ve tried dozens of interventions under his guidance. Interventions that made a remarkable difference: S Boulardii, high dose D3 (plus cofactors like Mg, Zn), high dose iodine, and a safe (but somewhat complicated) chelation protocol for mercury. The TGF-beta goes down, in chunks, with time
(…) CFS cases had higher TGF-beta protein levels compared to controls at
rest (median (quartiles) = 43.9 (19.2, 61.8) versus 18.9 (16.1, 30.0)
ng/ml) (p = 0.003), and consistently so over a nine-day period. However,
this was a spurious finding due to variation between different assay
batches.
There were no differences between groups in changes to TGF-beta protein
concentrations after either commuting or exercise. All other cytokine
protein and RNA levels were similar between cases and controls.
Post-exertional symptoms and perceived effort were not associated with
any increased cytokines.
We were unable to replicate previously found elevations in circulating
cytokine concentrations, suggesting that elevated circulating cytokines
are not important in the pathophysiology of CFS
“On the TGF-β note, I found it really bizarre that P.D. White coauthored a meta analysis of cytokine studies:
Chronic fatigue syndrome and circulating cytokines: A systematic review.
“exercise made no difference to already elevated TGF-β concentrations. The finding of elevated TGF-β concentration, at biologically relevant levels, needs further exploration, but circulating cytokines do not seem to explain the core characteristic of post-exertional fatigue.”
Total lack of intellectual curiosity on their part. If cytokines are elevated pre-exertion, but don’t spike post-exertion, that doesn’t mean they’re not playing a role. Their conclusion is analogous to saying “I was wearing this weighted vest before I went out for a walk. The vest weighs the same after the walk. Therefore the vest didn’t contribute to how tired I feel”
Step outside the realm of studies that are explicitly about ME, and, bingo, TGF-β turns off the conversion of T4 to T3. Dysregulated thyroid hormones, that could contribute to PEM. But White couldn’t be bothered to read a paper that had already been out for 10 years:
Transforming growth factor-beta promotes inactivation of extracellular thyroid hormones via transcriptional stimulation of type 3 iodothyronine deiodinase. https://www.ncbi.nlm.nih.gov/pubmed/16037131 “
Dear Cort
Thirty years of this complex in its severe form, hunting for years for explanation, yesterday I read Navariux’s hypothesis and I knew, at last they are on their way. I hope before it is too late for me. They are working on a microbiom..something…test…is it available for UK people? I really need hope right now. my weakness beca,e so bad my Neurologist attempted myasthenia treatment, IVIG. My neuropathy pain now so basd like electrcric shocks all over. My ‘fatigue’ surpasses description but my energy cells are turned off yet my body lives. Typed for me. Elaine
Montoya et al found higher tgf beta, and the Aussie group found higher activin b as a biomarker earlier this year. Interesting.
Follistatin reduces these.
Potential treatment?
Armstrong was kind enough to talk with me at the symposium. I mentioned TGF-beta because my doc has been testing for it for ages. Armstrong responded with Activin B. Interesting stuff.
After a cursory look at Follistatin, it seems to inhibit a broad family of morphogens. So, it might not be specific enough and thus cause all kinds of side effects. A trial in EAE mice might be nice though. Also, its still unclear if the elevated TGF-beta and Activin B are causal, or epiphenomenal, in MECFS.
i am 58 years old male in north dakota with severe cfs and fibro is there any hope in the future to treat this horrible thing i had 2 surgeries then it all started down hill fast with sore throat to cfs am on the guaifenisen protocol some better if there is help i would like to know
Hi Cort,
I just came across your article from 2013 regarding SFN https://www.healthrising.org/blog/2013/08/06/small-fibe-nerve-study-suggests-new-era-in-fibromyalgia-and-perhaps-chronic-fatigue-syndrome-may-be-at-hand/
I had to do my own exhaustive research in order to find anyone who did autonomic testing (AT) to explain my 5yrs of foot neuropothy & heat intolerance. I have been diagnosed with Lupus (1990), Fibromyalgia (2004) & after AT in March 2017, Sjogrens & SFN. I wish more specialist such as Rheumotology were better versed in these areas. My last appt. last Friday with my Rheum. was a disappointment, to say the least, when he dismissed my diag. of SFN,didn’t even know what a QSART test was & said they couldn’t help facilitate IVIG at their hosp. because “IVIG was reserved for Cancer pts.”.The other maddening piece of this is, that they refuse to coordinate care & refer this to PCP who knows even less about immune diseases. My only hope is that my upcoming appt. with John Hopkins,Baltimore MD, at the end of this month, will be the saving grace to my recovery.
Do you have any more current articles on this subject of SFN & IVIG?
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The Open Medicine Foundation is going to give the ME/CFS Community a first look at their findings (those they can talk about :)) during a Community Symposium on Saturday.
Health Rising’s Quickie Summer Donation Drive is On!
Thanks Cort!
Here’s the big Mark Davis, Jarred Younger, Montoya et al study mentioned above:
Cytokine signature associated with disease severity in chronic fatigue syndrome patients
“On average, TGF-β was elevated (P = 0.0052) and resistin was lower (P = 0.0052) in patients compared with controls.”
I’m excited to say that my rheumatologist has been testing for, finding, and treating elevated TGF-beta in his MECFS and fibromyalgia patients for years. I’m doubly excited to say he will be making the trip to attend the symposium. I really hope many of the speakers and researchers stick around to talk to people at the reception.
Personally, I can say my TGF-beta levels fluctuate in step with my symptom severity. Quest Diagnostics offers it as one of their blood tests:
http://www.questdiagnostics.com/testcenter/BUOrderInfo.action?tc=91238&labCode=AMD
Best,
Sean Glaze
Hi!
If you say ‘treated’, what meds does your rheumatologist use?
Thanks,
Cheers,
Liz
Hi,
Sorry for late reply, I thought I had notifications on. (Only saw this because I circled back post-symposium.)
Anyway, the only drug he has me on is LDN. He treats elevated TGF-beta by correcting nutritional deficiencies, toxin exposures, and microbiome imbalances that cause it to spike in the first place. I’ve tried dozens of interventions under his guidance. Interventions that made a remarkable difference: S Boulardii, high dose D3 (plus cofactors like Mg, Zn), high dose iodine, and a safe (but somewhat complicated) chelation protocol for mercury. The TGF-beta goes down, in chunks, with time
White e.a. didn’t find problems with TGF B and other cytokines.Cot, can you look deeper into this study?
http://onlinelibrary.wiley.com/doi/10.1111/cei.13023/abstract
(…) CFS cases had higher TGF-beta protein levels compared to controls at
rest (median (quartiles) = 43.9 (19.2, 61.8) versus 18.9 (16.1, 30.0)
ng/ml) (p = 0.003), and consistently so over a nine-day period. However,
this was a spurious finding due to variation between different assay
batches.
There were no differences between groups in changes to TGF-beta protein
concentrations after either commuting or exercise. All other cytokine
protein and RNA levels were similar between cases and controls.
Post-exertional symptoms and perceived effort were not associated with
any increased cytokines.
We were unable to replicate previously found elevations in circulating
cytokine concentrations, suggesting that elevated circulating cytokines
are not important in the pathophysiology of CFS
Peter White? Seriously? What do Bernie Madoff and Bagdad Bob have to say about the matter?
Oh, hey, I was just ranting about this over on the forum:
https://www.healthrising.org/forums/threads/omf-symposium-to-provide-first-look-at-metabolomic-immune-results-in-me-cfs.5521/
In short, the logic is flawed.
“On the TGF-β note, I found it really bizarre that P.D. White coauthored a meta analysis of cytokine studies:
Chronic fatigue syndrome and circulating cytokines: A systematic review.
“exercise made no difference to already elevated TGF-β concentrations. The finding of elevated TGF-β concentration, at biologically relevant levels, needs further exploration, but circulating cytokines do not seem to explain the core characteristic of post-exertional fatigue.”
Total lack of intellectual curiosity on their part. If cytokines are elevated pre-exertion, but don’t spike post-exertion, that doesn’t mean they’re not playing a role. Their conclusion is analogous to saying “I was wearing this weighted vest before I went out for a walk. The vest weighs the same after the walk. Therefore the vest didn’t contribute to how tired I feel”
Step outside the realm of studies that are explicitly about ME, and, bingo, TGF-β turns off the conversion of T4 to T3. Dysregulated thyroid hormones, that could contribute to PEM. But White couldn’t be bothered to read a paper that had already been out for 10 years:
Transforming growth factor-beta promotes inactivation of extracellular thyroid hormones via transcriptional stimulation of type 3 iodothyronine deiodinase.
https://www.ncbi.nlm.nih.gov/pubmed/16037131 “
That may be a prime example of an under-powered study…see upcoming blog on the Montoya/Davis study.
They really looked hard for a way to dispel their results but why did they use different assay batches? Not good research…
Dear Cort
Thirty years of this complex in its severe form, hunting for years for explanation, yesterday I read Navariux’s hypothesis and I knew, at last they are on their way. I hope before it is too late for me. They are working on a microbiom..something…test…is it available for UK people? I really need hope right now. my weakness beca,e so bad my Neurologist attempted myasthenia treatment, IVIG. My neuropathy pain now so basd like electrcric shocks all over. My ‘fatigue’ surpasses description but my energy cells are turned off yet my body lives. Typed for me. Elaine
Let’s hope that Naviaux and Ron Davis and others get the money they need to deeply dig into this. Keep hanging in there!
Must be Cort, sorry 🙂
Hi Cort. Who would you suggest I contact to get a CD of the symposium? Thanks.
I’ll try and post something when they are but I imagine the Open Medicine Foundation website would be a good place to find out how.
I saw something about DVD – I’ll look. Also I THINK it may become available on an OMF You Tube channel !
Looking for a provider in wnc who can prescribe low dose naltrexone for fibromyalgia preferably who accepts insurance.thank you
walgreens is now doing naltrexone remember is a compound..
Montoya et al found higher tgf beta, and the Aussie group found higher activin b as a biomarker earlier this year. Interesting.
Follistatin reduces these.
Potential treatment?
Cool, I’d never heard of Follistatin.
Armstrong was kind enough to talk with me at the symposium. I mentioned TGF-beta because my doc has been testing for it for ages. Armstrong responded with Activin B. Interesting stuff.
After a cursory look at Follistatin, it seems to inhibit a broad family of morphogens. So, it might not be specific enough and thus cause all kinds of side effects. A trial in EAE mice might be nice though. Also, its still unclear if the elevated TGF-beta and Activin B are causal, or epiphenomenal, in MECFS.
i am 58 years old male in north dakota with severe cfs and fibro is there any hope in the future to treat this horrible thing i had 2 surgeries then it all started down hill fast with sore throat to cfs am on the guaifenisen protocol some better if there is help i would like to know
Hi Cort,
I just came across your article from 2013 regarding SFN https://www.healthrising.org/blog/2013/08/06/small-fibe-nerve-study-suggests-new-era-in-fibromyalgia-and-perhaps-chronic-fatigue-syndrome-may-be-at-hand/
I had to do my own exhaustive research in order to find anyone who did autonomic testing (AT) to explain my 5yrs of foot neuropothy & heat intolerance. I have been diagnosed with Lupus (1990), Fibromyalgia (2004) & after AT in March 2017, Sjogrens & SFN. I wish more specialist such as Rheumotology were better versed in these areas. My last appt. last Friday with my Rheum. was a disappointment, to say the least, when he dismissed my diag. of SFN,didn’t even know what a QSART test was & said they couldn’t help facilitate IVIG at their hosp. because “IVIG was reserved for Cancer pts.”.The other maddening piece of this is, that they refuse to coordinate care & refer this to PCP who knows even less about immune diseases. My only hope is that my upcoming appt. with John Hopkins,Baltimore MD, at the end of this month, will be the saving grace to my recovery.
Do you have any more current articles on this subject of SFN & IVIG?
There are quite a few more blogs on SFN – just put it into the search box on the menu bar. ]
Have you checked out the resource section in Health Rising (https://www.healthrising.org/forums/resources/categories/orthostatic-intolerance-pots-and-dysautonomia.119/) or Dysautonomia International. DI has a map of ANS experts on its site.
If you’re not subscribed be sure to get subscribed. I have a blog that touches on these subjects coming out today actually. 🙂
Cynthia, curious which department at Hopkins you will be going to?