In apheresis, unwanted factors are taken out of the blood.
Apheresis only came to the attention of the ME/CFS community a couple of years ago. It’s big in some countries like Germany, but from what I can tell, is hardly used in the U.S. to treat ME/CFS or long COVID. If the authors of a couple of recent papers have their way, though, that will change.
Apheresis is a general term that refers to a process that removes unwanted elements in the blood. During the process, which usually takes from 2-4 hours, blood is drawn out, the unwanted part is removed from it, and the blood is returned to the patient. The type of apheresis anyone might undergo depends on which factors are removed from the blood. It’s an intriguing procedure given reports that an “X’ factor in the blood could be causing chronic fatigue syndrome (ME/CFS), fibromyalgia and long COVID.
The term can be quite confusing. At least a dozen different kinds of apheresis exist, including two that have been associated with ME/CFS – immunoadsorption and plasmapheresis.
- Immunoadsorption – specific antibodies – also called immunoglobulins – are removed. B-cells produce these antibodies to ward off pathogens, but they’re also used to turn on or off various body processes.
- Plasmapheresis – the plasma in the blood is totally removed and replaced.
(Berlin Cures has produced a drug called BC007 that it believes is more effective than immunoadsorption in mopping up specific autoantibodies. A long COVID trial is purportedly in the works.)
Apheresis is an expensive process that can cost up to several thousand dollars per treatment and is used to treat myasthenia gravis, leukemia, sickle cell disease, multiple sclerosis, chronic fatigue syndrome, long COVID, and others.
While European doctors and researchers have been pushing apheresis for ME/CFS in medical journals, apheresis is actually a well-known procedure that’s commonly used in the U.S., as well – just typically not for chronic fatigue syndrome (ME/CFS).
The website for the American Society for Apheresis contains a section on long COVID that lists many apheresis facilities in the U.S. including UC San Diego, Cleveland Clinic, Kaiser, Stanford, the Mayo Clinic, Yale, etc. The Red Cross also maintains apheresis facilities across the U.S.
German Focus
The vast majority of apheresis work in ME/CFS and long COVID appears to have been done in several centers in Germany. Because the centers use different filters to filter out different elements and lack well-defined patient groups, it’s been impossible – other to note that it’s being used quite a lot – to assess its overall effectiveness. One center, though, has apparently been using a consistent approach that predates COVID-19 and it recently released some information.
Report From the Clinic
In their hypothesis paper, “Post COVID and Apheresis – Where are we Standing?”, the authors briefly reported on 1,111 ME/CFS patients who had undergone the INUSpheresis type of apheresis from 2009–2022.
INUSpheresis
Besides autoantibodies, INUSpheresis also reduces inflammatory cytokines, oxidated low-density lipoproteins, environmental toxins, and large molecules – all of which contribute – interestingly enough, to thickened blood, and therefore could affect blood flows.
Hamburg Biologicum, an apheresis center in Germany, reports:
“With INUSpheresis®/blood washing, we can simultaneously achieve several goals: We specifically flush out environmental toxins in the blood that cause disease and inflammation. In addition, we reduce the remaining inflammation mediators by half with every INUSpheresis®, i.e., we reduce the inflammation per session by approximately 50%. We also filter out malformed autoimmune antibodies. In other words, we are not tackling the rapidly increasing global phenomenon of autoimmune diseases with side-effect-rich “anti” agents, but instead explicitly removing their triggering factors like environmental toxins, inflammation mediators and malformed autoimmune antibodies.”
Their long Covid and vaccination injury approach includes doing lipid apheresis first, then a naturopathic infusion to combat inflammation, then INUSpheresis® apheresis as well as acetyl glutathione (an antioxidant), and a vitamin preparation. Infusion therapies that target clotting may be included as well.
Other types of apheresis could be effective in ME/CFS or long COVID. Pretorius and Kell, for instance, proposed that H.E.L.P.: apheresis (heparin-mediated LDL precipitation) – which removes factors that impair blood vessel health and improves blood flows may be helpful, improve blood flows in the microcirculation, and break down microclots.
The REPORT
In Post COVID and Apheresis – Where are we Standing?”, the authors reported that 1111 patients diagnosed with ME/CFS following a variety of triggers (148 after COVID-19, 963 from other infections (e.g., Lyme disease, toxoplasmosis, EBV, or chlamydia), environmental factors (e.g., organic solvents) or unknown cause) had undergone INUSapheresis, and received steroids and high-dose vitamin C.
The authors reported that more was better with apheresis: 56% of the patients reported to be either cured or substantially improved following the 2nd INUSpheresis treatments, 64% were without symptoms or significantly better following the 3rd INUSpheresis treatment, and 74% were without symptoms or significantly better 6 months after the INUSpheresis treatments. Eleven percent reportedly experienced a moderate improvement and only 15% did not improve.
That was clearly good, if vague, news. We don’t know what “significantly improved” means, and no validated symptom testing was done, but the news overall was encouraging.
Long-COVID Study
In this study, the GPCR antibodies didn’t appear to make much of an impact.
The report on the 1,111 ME/CFS patients prompted a more rigorous study. As earlier, the study focused on long-COVID patients with classical symptoms of chronic fatigue (severe exhaustion, tiredness, post-exertional malaise, depression, headache, tinnitus, muscle pain, abdominal pain, and brain fog).
Twenty-seven patients in two different apheresis centers in Germany were again treated with the INUSpheresis type of apheresis. A steroid, prednisolone, was given between treatments to prevent the production of further autoantibodies and high-dose vitamin C was given to improve antioxidant capacity and reduce inflammation.
THE GIST
- In apheresis the blood is removed from the body and then “washed” of unwanted substances and then returned to the body. Depending on the type of apheresis done any number of substances – antibodies, pro-inflammatory factors, toxins – can be removed. The idea is intriguing, if as some studies suggest, an “X” factor exists in the blood that causes ME/CFS or FM that could be removed.
- Apheresis to treat ME/CFS or long COVID doesn’t appear to be happening much in the U.S. but it’s regularly used in Germany and other European countries. Several hypothesis papers and one study by German and UK doctors were recently published.
- One of the doctors reports concerned over 1000 ME/CFS patients seen over a 10-year period who had undergone a type of apheresis called INUSphersis which removes antibodies and inflammatory and oxidative stress factors. They also received a steroid and high-dose vitamin C. The report stated over half significantly improved or had no symptoms after the first treatment and with 2 or 3 treatments 64% reported significant improvement/no symptoms.
- That prompted a 27-person study that also assessed GPCR antibody levels, and indicators of inflammation, oxidative stress, and coagulation. Apheresis significantly improved all these factors by at least 40% and in some cases up to 90%.
- The fact that the GPCR antibody levels did not correlate with symptoms; that is some people with high antibody levels had mild symptoms while some people with low antibody levels had severe symptoms suggest they did not play a role.
- The study was crude – it contained no healthy controls and referred to reference values for some of its findings – but it had a positive result and will hopefully lead to the randomized, placebo-controlled studies that we need to fully assess its effectiveness.
- While apheresis does not appear to be used for ME/CFS much, apheresis is commonly done in the U.S. – usually a supplemental treatment to enhance the effectiveness of immunotherapies – and thus would be readily available if proven to be effective in ME/CFS and long COVID. (Another form of apheresis titled H.E.L.P. that removes clotting factors has been proposed).
- Apheresis is used in a variety of diseases including myasthenia gravis, lupus, and sickle cell anemia. It’s expensive and can cost several thousand dollars per treatment.
Antibodies against α1- and β1-adrenergic receptors and the muscarinic acetylcholine receptors 3 and 4 were assessed using the CellTrend assay – whose efficacy has been questioned. Red blood cells were evaluated using a NIKON ECLIPSE E 200 microscope.
No healthy controls were included and the study was done on patients who had experienced “clinical improvements”.
Results
Apheresis Helps – GCPR Antibodies Disappoint
Prior to apheresis, the antibodies were assessed relative to “reference levels” – not a strong measure – particularly given CellTrend’s possible problems. Three of the four antibodies were elevated according to that measure.
The apheresis did its job – it significantly reduced the levels of the autoantibodies by about 30-50% (ß1 &ß2-AdR, M3 &M4-AChR: 33%/ 28%, 48%, 39%). Markers of inflammation declined (sCRP, IL-1 beta and IL-6; 33%, 48%, and 64%) and so did, by one measure, oxidative stress (H202) (90%). Markers of coagulation (fibrinogen and homocysteine) dropped dramatically (70% and 64%) and cholesterol, triglycerides (TG), LDL, and HDL, fell below reference levels. Plus, other factors associated with coagulation (fibrin fibers, rouleaux structures (stacked red blood cells) disappeared.
The levels of the GCPR antibodies were not, however, associated with symptoms. In the discussion section, the authors made it clear that in this study, the antibodies did not tell the tale. Some patients with highly elevated antibodies were only mildly ill while others with normal antibody levels were quite ill.
As to symptoms – all we know is that the patients improved. That was expected – all the patients came from the improved group. Note that these doctors report that that is the largest group (70%).
The authors believe that several different pathways to long COVID exist and thought it unlikely for a single biomarker will, in the end, suffice. Instead, they believe that biomarker scores similar to those developed in autoimmune diseases will be developed to assess treatments in long COVID and ME/CFS.
Conclusion
The authors report filtering out unwanted elements in the blood can help. (Image from Alexdruz and Mæx and Wikimedia Commons)
Apheresis has clearly been used to treat ME/CFS in Germany for quite some time. I became aware of it as a treatment that could help wash out the GCPR antibodies that have created so much interest, but it’s clear that apheresis – a quite flexible treatment option – can do more than clear out these antibodies. In this case, that was a good thing, as the GPCR antibodies didn’t appear to figure in the patients’ symptoms. (This could be due to problems with the commercial method of assessing autoantibody prevalence. Researchers use a different method).
As one would expect from a blood cleansing procedure that does not get at the source of the problem, apheresis is usually not a standalone treatment and is usually used in combination with immunotherapies – as it was in this case.
The report concerning the 1,111 ME/CFS patients clearly came from doctors’ records. The smaller, more rigorous study was better but did not involve healthy controls, and relied on reference values and an antibody test that may be suspect.
The study did, however, show that apheresis can be pretty darn effective at washing out unwanted elements in the blood and may be helpful with symptoms. That was encouraging given findings in both ME/CFS and fibromyalgia that something in the blood is causing problems. It was also good to see that only a couple of sessions of this expensive procedure were needed.
We clearly need much better studies to know what apheresis can and can’t do in ME/CFS and long COVID. While studies from clinics can’t match the rigor of clinical trials, they can get the word out and that’s what they did here. Whether it’s a case report or a small trial – even one that’s not particularly rigorous, like this one – publishing in a scientific journal is the best way to get a possible treatment in the hands of as many doctors as possible.
Apheresis doesn’t appear to be regularly used in the U.S. for ME/CFS but since it is a commonly used procedure and medical facilities are readily available the potential is there. If doctors in the U.S. or elsewhere want to give it a try, now they have a citation that might help and a roadmap they can follow. For their part, researchers have another possible treatment to try. Let’s hope these reports spark some interest and more investigations into this intriguing approach occur.
Update!
Patrick Ussher describes his apheresis experience at a German clinic.
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I had two treatments of apheresis and it did nothing in the long term.
What type of aspherisis? I have a very high apo(a) level and am a candidate as nothing tried has reduced my level. I should be eligible for insurance coverage. I have CFS/ME post viral having GBS for now 10 years. My high apo(a) puts me at extremely high risk for MACE or Stroke. I have my LDL down to 25.
Do you have CFS, fibromyalgia or long covid?
Thanks, Marina
Thank you for the interesting article. It’s disappointing that the study was so poorly designed. I would feel better too if I was on prednisolone.
I wish I could get this under insurance I the USA….If anyone knows where this can be had in the us please post.
I do have ly,phone stage 4 I wonder if that may be a reason to get?
Thanks court
Since it hasn’t been validated in studies I would be surprised if insurance would pay for it.
I don’t know how our country has info ores this illness so long….aids long COVID etc all the money in the world while we got old and will be at the end of our lives even if they do find help for us with severe lifetime CFS …..by trying to help a whole other illness of course.
It’s very disappointing. I hope some day ME/CFS will be a case study in medical schools in how broken our medical system is in some ways.
Our medical system is broken in so many ways.
Lack of CFS research is just one of them.
I’m convinced it will.
From someone who is recovering from Long Covid & ME/CFS. Please check out CFS Health online. Without this Australian based companies help. I’ve no idea were I would be. I am getting better. It just takes alot of hard work.
Thanks Emma and congratulations. Anything particular about that program that helped you?
Could this help with unresponsive high blood pressure as well?
Interesting idea. I was wondering if this process would be at all similar to chelation with EDTA. After being diagnosed back 34 years ago, I read about possible toxic chemical levels in the blood that could impact chronic fatigue. I tested very high in aluminum; doctors retested me three times as they were so surprised. I then found that EDTA could remove it and sought out a few physicians in the US who did this and my levels reduced. I also have bismuth, arsenic, and cadmium when tested. I did feel a bit better following this treatment but not by much and my fatigue and unwanted symptoms returned.
Can you tell us what caused your high levels of toxic metals?
Unfortunately, no physician could ever figure out why I tested high. I grew up avoiding aluminum…using deodorants, cookware, and cosmetics. I am clueless as to where I could have been exposed to such high levels. I wondered if it could have been some kind of genetic factor.
if apheresis is “bloodwashing only”, is this not that what carmen scheibenbogen (germany) tested on ME/cfs and OMF did a small study also? Or am i wrong?
That’s correct. Scheibenbogen did a small immunadsoption study a couple of years ago and recently started 2 RCTs for immunadsorption (https://clinicaltrials.gov/ct2/show/NCT05710770?term=scheibenbogen&draw=2&rank=5, https://clinicaltrials.gov/ct2/show/NCT05629988?term=scheibenbogen&draw=2&rank=2)
stupid thing, no results posted (or my brain does not work) on the link you gave me. i thought OMF did also a small clinical trial. and if my brain still works a bit, i saw a youtube that carmen scheibenbogen is still bussy with it, only might have said with different treatment(s), to research what works for who with ME/cfs… A bit of hope…And as Cort written the word is out…Now still the money for ME/cfs but they are bussy on that in germany. Hopefully a lot!!!
The links are for her 2 currently running clinical trials. These are her old results https://pubmed.ncbi.nlm.nih.gov/29543914/.
thanks!!!
At last a potential treatment that addresses environmental toxins. The Centers for Disease Control monitors 400 chemicals in Americans.
https://www.cdc.gov/biomonitoring/environmental_chemicals.html
While some of the levels are extremely low, no one knows what the interactions between these toxins may be. Some people are also more susceptible to the deleterious effects of certain chemicals because of genetic susceptibility or deficient detoxification systems (or both).
The blood cleansing treatments mentioned in this article could certainly address removal of environmental toxins from the blood and worth the cost if they were a long term solution.
The problem is that these toxic chemicals and heavy metals are stored in body fat for the most part.
What we need is a safe way to pull the toxins out of body fat into the blood and safely out of the body.
IV phosphatidylcholine followed by EBOO (extracorporeal blood oxygenation and ozone – dialysis) the following day.
I started these treatments, but for now have had to discontinue due to allergic type reactions to the heparin in the EBOO. This is the best approach I have heard of for pulling toxins, biofilms, and other crud out of the body.
Jaime, This is very interesting. The extracorporeal blood oxygenation and ozone – dialysis is a treatment my doctor has mentioned several times. I hadn’t heard of IV phosphatidylcholine, but a little research suggests that it can pull toxins out of the fatty membrane that surrounds every cell. How expensive is this protocol and where were you treated?
Re. Parkinson’s Disease. Pesticides have been implicated as an environmental cause of PD.
https://pubmed.ncbi.nlm.nih.gov/18453001/
Correction: the author of The Poisoning of Michigan is Joyce Egginton
Hi Betty,
The IV PC costs $275 (varies by dose)
The EBOO costs $1000 (I had them add UVB light, no extra cost)
I go to a center with locations in Hudson, NY and Albany, NY.
I hear that some places charge even more for the EBOO.
A few weeks after the series of two treatments (2 of each type) I had my blood checked with dark field analysis, and it looked clean and clear, which was amazing, as pre treatments, it had a lot of biofilm and the cells looked clumpy.
I think toxins are a major problem for our health. For so far i know it’s not possible to clean your body from all those toxins some will be stay in your organs (liver).
One of my doctors had me do the Great Plains Lab test for toxic non-metal chemicals. My results were very high in styrene, pesticides, herbicides and a number of other toxins.
I used liposomal glutathione to pull the toxins from fat cells and a charcoal binder to pull the toxins out through waste. It took about a year but then all of my levels were down to 0 or normal levels.
It had no impact on my health that I can tell.
Hi Kelly, I know you must have been disappointed with your lack of improvement after this protocol.
Great Plains Labs (now Mosaic Labs) measures a profile of toxins in urine.
This is not sufficient to find out what is stored in body fat.
You should read the “Poisoning of Michigan” by Joyce Eggerton. This is a true account of what happened when bags of PBBs (polybrominated biphenyls were accidentally sent out to farms all over Michigan in the early 1970’s. The bags looked just like the normal food additives the farmers used so the cows, pigs, chickens, etc. were dosed with this very toxic and persistent chemical.
Soon the farm animals began to develop a wasting disease that looked like AIDS. They also aborted or gave birth to deformed offspring. The farmers couldn’t sell such poor looking animals but they couldn’t afford to waste them either. So the farm families ate them and soon they were suffering from the same illnesses that the farm animals had.
As fate would have it, one of the farmers had formerly been a chemist with Dow Chemical Company and he suspected that this was some kind of chemical poisoning.
Fat samples were taken from the cows and tested with a a gas chromatograph and mass spectrometer. The profile of PBB emerged. No one would have ever thought to look for fire retardant in a cow.
The late Dr. Irving Selikoff from Mt. Sinai’s Environmental Unit in New York brought a team of specialists to Michigan and set up facilities where 1000 members of the farm families went through extensive testing. The common denominator was adverse effects on immune function.
As far as I have been able to investigate no effective protocol was ever developed to detoxify these families.
This is also true of the Vietnam and Gulf War veterans our organization works with. If glutathione and charcoal could remove chemical toxins from the body, these soldiers wouldn’t be chronically ill and have children with birth defects.
The UK‘s ME Association put out a warning last Summer (2022):
“ Until we have sound evidence from more than one properly conducted clinical trial to indicate that apheresis is a safe and effective treatment for Long Covid (or ME/CFS) this is not something that we can recommend for either Long Covid or ME/CFS”
https://meassociation.org.uk/2022/07/british-medical-journal-bmj-long-covid-patients-travel-abroad-for-expensive-and-experimental-blood-washing/
The UK’s ME Association has suggested they would be willing to use one of their funds to pay towards research in this area within certain circumstances.
“ What needs to be done by the private clinics who are promoting apheresis as a speculative treatment for Long Covid (and ME/CFS) is to organise a properly organised clinical trial to assess both efficacy and safety. If it does turn out that there is good evidence of clotting and that apheresis is a safe and effective treatment for Long Covid, then the MEA Ramsay Research Fund would certainly be willing to consider funding a trial in ME/CFS.”
https://meassociation.org.uk/medical-matters/items/treatment-apheresis/
Let’s hope. I don’t know if this small long COVID trial would do the trick since it was missing several elements like healthy controls but it is a step forward.
if i understand it right, it is more on the commercial “clinics”, not even only apheresis, they give other meds to (in the first link you gave) and the second link is on microclots in long covid and ME/cfs. carmen scheibenbogen, i thought never used apheresis for ME/cfs for clots and did not use any other meds with it. if i remember well, the webinar was more on trying to find out scientificically what works for who in ME/cfs. The commercial “clinics” that you in fact can not call clinics, more moneymakers, will i guess never do a double blind placebo controlled study. they are not bussy with research… I hope for some of us, it must yet be found for who apheresis helps by carmen scheibenbogen, it helps a part of us. even if only small improvement or no further decline.only it takes so much time all, time that i do not have anymore…
Scheibenbogen published a related paper as far back as 2018…
“ Immunoadsorption to remove ß2 adrenergic receptor antibodies in Chronic Fatigue Syndrome CFS/ME”
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5854315/
Interesting. Yet again, I think whatever is going on with our blood is a possible symptom. First 20 years I didn’t have any blood or vascular problems that I was aware of. Now, periodically I get intense pain that thankfully passes that I’m almost certain is vascular. And trying to draw blood from me is now a problem. Too thick and IF they can get it to start flowing, will often quit before even filling one vial. And I drink lots of water for 20+ years.
@Tracey Stanley,
I’m sorry for meddling, but when I read that you are having problems with ‘thick blood’ I got concerned. There are a number of conditions (and pre conditions) which present with this and most are so rare that doctors don’t usually test for them. Some come with ME/CFS like symptoms too. Do hope you have very good doctors who ruled any of these out.
How expensive is ‘expensive’? Is this the kind of thing movie stars and celebrities with ME/CFS do? There are so many reports of singers/actors/celebrities who are ‘sick’ but manage to go on tour, etc.
I’d last 2 days, if that.
But if I knew of something that would have let me enjoy my son’s wedding, instead of feeling like I was dying the whole time, I would have gladly paid a couple thousand for that one day.
Also, if it works, but is expensive, why aren’t we clamoring for government funds like the Alzheimer’s drug people and all the others with rare and expensive diseases and orphan drugs? There’s a new treatment for sickle-cell anemia – hideously expensive and involving stem cells – but it is a CURE. Why can’t I have some of that for a destroyed life? I could pay a lot more taxes if I were working.
Asking for a novel I’m writing, too. And what are the long term consequences, if any, of removing your blood, ‘cleaning’ it, and returning it to your body repeatedly?
A Double-blinded, Randomized, Sham-controlled Trial of Immunoadsorption (IA) in Patients With Chronic Fatigue Syndrome (CFS) Including Patients With Post-acute COVID-19 CFS (PACS-CFS) is going to take place at Charite University in Berlin.
It probably won’t be fully completed until Feb. 2025. They will have 66 participants and follow them for 6 months after a 10 week treatment. I guess what has held this up (other than the total lack of urgency in the medical community pre-Covid) is that while very safe, it is considered invasive, and the sham treatment is controversial. They are resolving this by having a smaller than typical control group.
I’m curious if anyone has tried immunoadsorption? The trial (ClinicalTrials.gov Identifier: NCT05710770) lays out all the criteria…so I guess I’m wondering if one could find a doctor/medical center to perform this treatment as a possible solution? Immunoadsorption is used in the US for other conditions.
I’m “newer” to this website – I have been ill for three years now, and I know many have suffered much, much longer, but I’m about to turn 70 so it’s hard to see potential on the horizon and wait several years. I guess at my age I’m open to trying things that might help and probably won’t hurt.
Thank you Cort for this incredible website – it’s become my go-to for in depth information.
Great news! Thanks, Marcia – just what we were looking for 🙂
Is ME/CFS one of the post-infection diseases? Is Parkinson’s disease also a post-infection disease? Is MS a post-EBV disease? How does the infectious virus/bacteria/prion get to the brain? The answer ma be here:
https://medicalxpress.com/news/2023-05-potential-parkinson-disease.html
“[our results show] specific strains of Desulfovibrio bacteria are likely to cause Parkinson’s disease. The disease is primarily caused by environmental factors, that is, environmental exposure to the Desulfovibrio bacterial strains that cause Parkinson’s disease. Only a small share, or roughly 10%, of Parkinson’s disease is caused by individual genes,”
then, the most important quote for me was this:
“Our findings make it possible to screen for the carriers of these harmful Desulfovibrio bacteria. Consequently, they can be targeted by measures to remove these strains from the gut, potentially alleviating and slowing the symptoms of patients with Parkinson’s disease. Once the Desulfovibrio bacteria are eliminated from the gut, α-synuclein aggregates are no longer formed in intestinal cells, from which they travel towards the brain via the vagus nerve like prion proteins,”
What?? Prion proteins travel to the brain from the gut along the vagus nerve? Did I miss this discovery? So that’s why eating mad-cows cause prion disease in the brain? Because they travel along the vagus nerve? So now they hypothesize that these Desulfovibrio bacteria sit in the gut and produce aggregates that travel to the brain and cause Parkinson’s disease.
My question now is this: What OTHER bacteria in the gut produce proteins or aggregates that travel along the vagus nerve to the brain? And how can we stop this from happening?
Ann1,
I’d actually been thinking about this during the week. What is the path into the brain for pathogenic substances in ME/CFS (and what are they)? Into the blood, then somehow through the blood/brain barrier, or some other route? The other route prime suspect being the vagus nerve, as you point out. Is that why FMTs help with ME/CFS symptoms? But then what explains the gold standard science results published a few years ago in PNAS by Ron Davis (i.e. something in the blood plasma being pathogenic)? Or are both of these down stream symptoms of the one problem (the “leaky gut” type hypothesis)? Chicken and egg.
And how would such a model of disease explain the massive increase in Parkinson’s Disease after epidemics (e.g. Spanish Flu, and no doubt Covid-19 sadly) given the virus instigation?
Whoa…That give me a chill. Did it really originate in the gut? That is an amazing finding…
Lono and Cort:
I have more questions, as well. What do they mean by “travelling”? How do the infectious agents move up the vagus nerve? Do they crawl? Call a cab? Take the bus? Do they infect the nerve all the way from bottom to top? Do they do this in the myelin sheath or inside the nerve cell itself? Do they spill over into the blood stream as Lono guessed above? Can anti-virals reach all the way inside a nerve cell axon? We need answers.
I think in the Parksinson’s case they are producing factors which are going into the circulation and getting into the brain that way, maybe (??). If there are breaks in the blood-brain barrier pathogens or immune cells or immune factors can get into it that way. Otherwise I don’t know.
If the vagus nerve transmits immune signals to the brain which responds with inflammation of its own – that’s one way the periphery can affect the brain without pathogens or whatever actually accessing it.
I think you are getting warm there Cort…. I am pretty confident this sort of interaction between the brain and CNS is at the heart of the illness.
I am going to try nicotine in the near future, studies have shown it blocks the inflammatory immune response in the brain to peripheral signals.
Interestingly I used to smoke socially and I felt in some ways my symptoms benefitted a lot.
I have been searching in vain for natural products that act in a similar way in the brain /CNS to nicotine, but in vain. If anyone knows of anything I would be keen to know.
https://mscanada.ca/ms-research/latest-research/ms-society-funded-study-shows-that-nicotine-reduces-the-invasion-of
This is extremely interesting. Thank you, once again, Cort! I rely heavily on your articles and so appreciate them and you.
I’m 38 and going on 7+ years of ME/CFS. I’m not the type of person to sit around and wait. Taking only 2 short years to become 90% bedridden with a steep and fast paced cognitive and neurological decline along with the pain and suffering of all the other symptoms… I’m not the type of person to sit around and wait (rightfully so). Figuring I have nothing to lose, I’ll try anything within reason.
This article is particularly intriguing to me as I’ve experienced helpful results from similar techniques but nothing near this powerful. I do believe there is merit in apheresis as a potential first line treatment. My only question, which hopefully can be answered in studies, is how long the improvements last.
I’ve traveled out of the country to receive treatments used in the US but not approved for ME/CFS. What comes to mind most with regard to apheresis is hyperthermia which was used to kill off pathogens from my tissues and blood while simultaneously administering 5 different antibiotics intravenously. These treatments were indeed helpful. In addition, during that same time I did a similar course of treatment with supportive therapies. A port was out into my chest for smoother treatments not having to go through too many painful pricks to the veins. Hyperthermia was performed 5 days apart and in between (all intravenous) was high dose vitamin C, glutathione, ALA, chelation, artemisinin, EDTA, hydration, PPN nutrition, ozone with heparin. I’ll never forget watching my blood come out of the tube to mix with the ozone and how thick and clotted it was. Thank goodness for the heparin which also gave me energy. This two week long hospitalized treatment series was by far the best I’ve ever felt. Far better than the weeks of NAD+ and high dose C IV therapy I often get at home.
After receiving those treatments and moving into a new home with expensive air purifiers I experienced significant improvement within two weeks. That’s how fast I was able to become fully functional (driving, shopping, working, etc), never laid in bed again, regained cognitive functioning and experienced marked improvement in all other 20+ horrible symptoms. As grateful as I am, I’d still love to resolve the remaining symptoms of PEM, fatigue and neurological issues.
I’m tempted to hypothesize apheresis would provide a more permanent therapeutic improvement in symptoms because rather than administering a short acting drug, altering blood plasma may produce more permanent systemic change. I’ll definitely be looking into a possible trip to Germany!
Really interesting treatments there! Fascinating that you could see your thickened blood.
My daughter, 13 yrs, me/cfs 2.5 yrs, has been treated with immunoadsorption followed by pyridostigmine (brand name: mestinon) in march.
Initial worsening, now slightly better than before treatment but yet at this point no true recovery story. I would spend the 15k € again but to be honest I know of just 1 person in Germany that fully recovered with immunoadsorption. A young lc patient. Still we are all desperatly trying everything we can…
A recent study in Jena, Germany found that immunoA has no considerable effect in this context. Many hospitals in Germany refuse to treat me and lc with immunoA. To make this clear: treatment is at your own expense. All reports from Germany are in English language by the way if you want to do research. The Charité results are up to come.
In the meantime there is an interesting online congress at Charité on Friday:
https://www.medpoint-gmbh.de/me-cfs-symposium-2023
Free participation via this registration form, should be in English language, only the registration seems to be German language but it is very easy to handle.
Thank you for your great work, Cort! The German community is following you!
Thanks, Daniel and thanks for relaying your experience. I’m certainly following the German community as well. It’s amazing how far things have come in Germany 🙂
Well… after looking into this a bit deeper and reading more comments I think this is one of those “let’s hang tight and see what happens” type of situations. This one is a little more risky than I’m willing to go for.
I do believe in finding a way to get the sticky blood moving.
My doctor says we’re all stuck in aerobic glycolysis.
On the topic of risky, I’ve been prescribed Dihexa but am not willing to take something that has only been studied on mice.
Shea, I am very interested in discovering where you went for treatment. I have been helped in the past by a German clinic, and also by a Belgian doctor, but can’t seem to get past the last bit of PEM and exhaustion. Thanks!
I prefer it when there is a GIST section!! I can’t concentrate enough to read this. 🙁
Me too! I actually made one and it disappeared and I was too exhausted to do it again. I will do another one.
This sounds very promising.
If anyone is interested in this, I would go for the specific INUSpheresis discussed because I attended the EBOO/Asphersis clinic in Cyprus for many weeks and nobody there was getting better. Everyone I spoke to had done 12+ treatments and with no results.
Please be very careful with studies based on INUSpheresis.
In contrast to immunoadsorption, Inuspheresis is not approved for any regular disease in Germany, it’s totally outside of the standard medical care.
In Germany, laws regarding treatments outside of standard medicine (roughly spoken “naturopathy”, all paid privately) are very lax. You can also get your blood “laser-treated” (no idea why anyone would do that) and pay money for that.
These Inuspheresis clinics are completely outside of the governmental medical system.
There are some very dubious actors around promoting INUSpheresis with significant financial interests. Some owning supplement companies, others with huge red flags like prior history of naturopathy in oncology.
I would never do one of these treatments, since you literally have no idea how the quality control is for the procedure or the filters.
Immunoadsorption is totally different, since it is approved for regular diseases and thus tightly controlled. Also has big manufacturers of filters like Fresenius.
Thanks, Michael for your cautions. My guess is that the same is roughly true for many alternative health procedures done in the U.S. None are paid for by insurance and studies, probably because they are too expensive, are rarely done. Good to hear about immunoadsorption, though 🙂
I just think that there is no reason to not go with immunoadsorption instead, since that removes IgG3 which is the basis of the autoimmunity theory (eg GPCR AAbs).
Inuspheresis is a glorified immunoadsorption (if one believes in the quality of their INUS filter) and they argue it filters out “toxins” on top but there’s zero evidence.
I ( ME since 15yrs)took 5 H.E.LP. Apherisis in Oct 2022 and my daughter ( M.E. Since 4 yrs )took 2 treatments. We both are improving gradually since then.
My daughter is now at bell 30+ from bell -20. No more housebound. I am at bell 60 from bell 30+.We both have M.E .
We are going back this year but only for my daughter.
Good to hear Alka. That’s the form that Pretorius and Kell suggest might be helpful in removing factors associated with coagulation. Can you say where you got it done and how much it cost?
Yes, the one that removes the most bad guys. It clears microclots and their theory is that these bad guys are hiding in these stubborn microclots The treatment was started by a German doctor and then they opened a centre in Larnaca,Cyprus . Medical officer Silke Fischer has worked in Braun for 10 yrs… , the company that makes these Apherisis. We met many long covid and M.E. Patients From all over the world, mainly Europe who have returned for the treatment. I took the treatments through a catheter ( a small procedure where they stick it in your vein) as my blood vessels were so damaged that they could not fined any robust veins and the (blood was so sticky ) to draw any blood from my arms. You have to be careful with the catheter though . My daughter took 2 treatments by arms but the second one made her very tired and her vein was collapsing. This time she will get it through a catheter. One treatment is for $3000 AUD
Catheter procedure including removal is about the same. Then accomodation , food, and flights on top. We were there for 38 days.
Irelavant to this treatment but we got full gut microbiome mapping and found out SIBO and major dysbiosis. Currently, started treatment for that ( just this week) . Thanks so much Cort for all the hard work put in. I want to get the CSF leak fixed as well( Melissa’s story) . Will see a neurologist for my daughter now that she is 16. Every child deserves to be at school and have friends. These kids need a chance to live their lives. I know many in Australia through a Facebook page of ‘ parents of young children with severe M.E./cfs’.
Thanks for all the info. That sticky blood is something else! Good luck with the spinal fluid leak 🙂
Thank you Cort.
This is the first treatment I have seen which actually MIGHT cure (at least partially) my Chronic Fatigue.
Over 20 years ago, a researcher with a special microscope told me that my red blood cells were abnormally coagulated. Now, at last, a possible treatment for that.
If I have to get to Germany for the most precise treatment, I will try to do that.
Laurence, and anybody,
if you have questions regarding immunoadsorption options in Gerrmany, do not hesitate to contact me! We’re all one community! I do not believe it is a game changer for all of us. But on particular the recent lc patients <1yr may recover!
daniel_zahrai-sani@hotmail.com
Has the CytoSorb immunoabsorption filter ever been used in ME/CFS or Long Covid? Is it even possible to have any access to it, even in Germany?
I am; interested
I am wary of anything expensive, a big business, but I am glad I read this as it reminds me of the many herbs that are considered blood cleansing and that people have used fasts, grape juice diets, etc to help heal themselves so I will see if I can start to look into what might be good for me… in my sloooooooooooow motion.
What are the risks, I wonder? There’s the usual one of infection and sepsis (from having a needle inserted into your body, or from port or PICC). Any others?
I’ve heard a lot of stories about Help aphresis (I’m from a country next to Germany)
This aphresis often has small improvement but some people also decline a lot
Very curious to hear.more about this other type of aphresis
Hey Cort, are there ANY doctors or trials in North America that are doing the HELP apheresis? Results definitely look worth considering trying it.
Thanks again for all your research over the years—–
There is an American Society for Apheresis – they might know. Apheresis is used in a lot of different ways. I don’t know why it wouldn’t be possible for it to be used here (???)
Out of desperation, I tried INUSpheresis in Frankfurt recently. The treatment itself cost almost $6000, plus the travel. I had two sessions, with two days between them. I felt normal (not sick) after the first treatment, and this continued for three days – that is, though my return to the U.S. Since then, my ME/CFS symptoms have been worse than when I left. This is possibly due to an infection, but the upshot is that the apheresis didn’t improve me durably enough for me to try it again. (However, it was nice to feel okay for a few days!)