“These are really….immunological disorders” Dr. Carl-Gerhard Gottfries (psychiatrist)
It’s a fascinating story. It involves a psychiatrist who over fifty years ago cured his chronic fatigue syndrome using an immune booster. When he was barred from treating others in the clinic with it he resumed his psychiatric work but never stopped thinking about it. Thirty years later he used the same agent to successfully help many people with ME/CFS in an ME/CFS clinic in small town on the west coast of Sweden.
Gottfries has been dealing successfully with ME/CFS longer than many patients have been alive.
His names is Dr. Carl-Gerhard Gottfries. He’s the founder of the Gottfries Clinic in Sweden. He became interested in ME/CFS and FM almost fifty years ago after the Asian Flu epidemic of 1957/8 ravaged Sweden leaving some with severe and long lasting post-infectious fatigue. When doctors couldn’t explain what was going on with these patients, they were sent, of course, to his psychiatric clinic.
Gottfrie’s detailed examinations of over a hundred patients, however, uncovered no signs of a psychiatric disorder. He might have left it at that – another medical mystery – but then he caught the flu.
Gottfries was in bed for a week – that was normal – but then like his patients he had trouble recovering. Convinced that some of the infection must remain Gottfries began attempting to boost his immune system. In the late 1950’s he didn’t have many options and so he began a course that many today would find frightening – he began poking himself with vaccines.
It took him three years but eventually Gottfries found that a staphylococcus aureus vaccine (Staphypan Berna (Berna Biotech, Switzerland) containing a mixture of staphylococcus strains and a toxoid worked, and his fatigue went away. When his superiors balked treating patients at their psychiatric clinic with vaccines Gottfries returned to his focus on dementia and other diseases.
He kept taking the vaccine, though. He had to. He found that if he didn’t take it every month that he relapsed. Gottfries concluded that the vaccine was boosting his immune system enough for him to feel well again for about a month. In what is surely the longest ME/CFS treatment regimen on record Gottfries has been taking the staphylococcus vaccine every month for over fifty years.
After a long career in psychiatry, Gottfries retired in 1992. By then fibromyalgia and chronic fatigue syndrome – two diseases that tracked closely with what he had experienced – had been identified. Upon retirement Gottfries immediately opened a clinic focused on treating people with fibromyalgia and chronic fatigue syndrome. The Gottfries clinic featured three other psychiatrists and used the staphylococcus aureus vaccine.
The Studies
The treatment is safe and the adherence to the treatment is impressive. Gottfries et. al.
The vaccine helped. In order to get the word he conducted two placebo controlled staphylococcus vaccine trials in 1998 and 2002. The 1998 28 person trial found that 50 percent of the patients were able to resume half or full-time work. Sixty-five percent of the FM and ME/CFS patients taking the vaccine in the 100 person 2002 ME/CFS trial responded.
A 2004 study suggested the vaccine was helping to neutralize bacterial toxins released during infections by increasing serum antibodies.
Withdrawn
Gottfries had published three successful studies but the 2004 study was his swan-song. Citing new, expensive European regulations the pharmaceutical company stopped making the vaccine in 2005.
Suddenly the vaccine was gone…
Gottfries continued to report on his success in journals outside the research mainstream. In a 2006 Journal of Chronic Fatigue Syndrome and a 2009 IACFS/ME Bulletin publication Gottfries reported achieving a 50% reduction in fifteen symptoms in a 160 person trial. Five symptoms (concentration difficulties, failing memory, irritability, sadness and autonomic disturbances) returned to normal. Fatigability, reduced sleep, failing memory, concentration difficulties, hostile feelings and sadness improved significantly.
The vaccine was always safe and dropout rates were low. As Gottfries had experienced booster shots were needed every 3-4 weeks to maintain the effect. In a 2009 report Gottfries stated the clinic had unsuccessfully tried to find a replacement vaccine but was attempting to develop a Staphypan-like product themselves. That apparently has not worked out.
(Antibiotic resistant staphyloccocus aureus strains are a major medical concern but several attempts to develop new vaccines have failed. A new, experimental vaccine looks promising but there’s obviously no way to tell if it would have similar effects as the Berna vaccine – which used different factors to fight the bacteria.)
The Gottfries Clinic
Image from the Clinic’s website
The Gottfries Clinic’s most effective treatment was gone but it continued on. According to its website the clinic now has a staff of 10 six of whom are medical doctors (four are psychiatrists) and sees about 2500 patients a year. It’s surely the only ME/CFS clinic in the world run primarily by psychiatrics who employ a biomedical approach to the diseases. When Gottfries talks about ME/CFS he refers to an immune disorder.
The clinic lists painkillers, sleeping pills, anti-depressants, Vit B-12/folate, probiotics, psychosocial measures and physiotherapy as treatments. Over time it’s engaged in several clinical trials including Cymbalta, Savella, Lyrica and a dopamine stabilizer called OSU-6162.
B-12/Folic Acid Work
In 1997 Gottfries found greatly increased levels of the toxic metabolite homocysteine in a small spinal fluid study of ME/CFS patients. Since homocysteine should be metabolized by vitamin B-12 and folic acid Gottfries suspected reduced transport of B-12 into the brain was occurring. He found that the brain-fog in a subset of patients responded well to very high doses of injected vitamin B-12.
Some didn’t however. Further investigations found that people who didn’t respond to B-12/folate had the MTHFR mutation. Fifteen years of work on B-12/folate at the clinic ended up sparking the Open Medicine Foundation’s placebo-controlled, double-blinded vitamin B-12/folate MTHFR multi-center study which began earlier this year.
Heat Shock Proteins
Is an autoimmune process knocking out heat shock proteins in ME/CFS
Gottfries continued exploring new avenues. Working with Jonas Blomberg he and others found antibodies to heat shock proteins in the mitochondria of the cell in about 30% of ME/CFS patients. This wasn’t the first time the heat shock proteins had shown up in ME/CFS. Small French and German studies suggested that some heat shock proteins were getting wiped out during exercise.
Gottfries believes that an autoimmune process may be impairing mitochondrial energy production in these patients.
Gottfries Clinic Future In Doubt
The Gottfries Clinic’s future, however, is in doubt. Funding for the state-funded clinic is slated to be withdrawn in Nov. 2016. According to the petition the clinic, which provides both biomedical and psychological support, and has conducted numerous clinical trial and research efforts, is to be replaced by a purely psychotherapeutic approach.
Politicians in Gothenburg, Sweden have now decided not to renew the contract with the clinic when it expires on 30 November 2016. Instead, it plans to announce a new procurement for the treatment of so-called MUS (medically unexplained symptoms). Their view is that ME/CFS and Fibromyalgia are not separate diagnoses but belongs to a group of illnesses called functional somatic syndromes, i.e., psychosomatic disorders. The premise is that these should be treated only with various forms of psychotherapy. The patients will have no biomedical treatment. – from the petition to support the Clinic.
You can support the clinic by signing a petition on MEAction.
Conclusion
The Scandanavian contributions to ME/CFS continue to surprise. Before Fluge and Mella stumbled onto Rituximab, Gottfries was having success with a Staphylococcus vaccine. Gottfries work with B-12/folate then sparked a large treatment trial and he participated in the recent heat shock protein work.
The idea that at least some cases of ME/CFS/FM could be treated effectively using a drug – a vaccine – in the fifties was a revelation to me. The fact that Gottfries discovery languished for over thirty years without anyone else picking it up makes one wonder what other options for ME/CFS have not been tested.
Gottfries idea – that he had to boost his immune system – made sense. His decision to try vaccines to do so was apparently a logical one as well, yet I’ve never heard of anyone else trying this approach. Did others try? Did they lack his persistence? Or did they not get his results?
Gottfries old-school immune approach never caught on. Was an opportunity missed?
The Gottfries story is a bit dismaying as well. Gottfries appears to have had considerable success with his vaccine, and he did his best to get his work out but it’s not clear that it ever really did. Was the staphylococcus approach too novel? Did the fact that it came out of Sweden hurt? Treatment results like his deserved more study, but when the drug company stopped making the vaccine that was the end of a promising, if unusual treatment.
The Gottfries story also demonstrates how complicated the immune system and ME/CFS are. Gottfries vaccine work boosted immune functioning and antibody production. Fluge and Mella’s work with Rituximab knocked antibody production down. How to parse these two seemingly diametrically opposed results? Does it help that infections can trigger autoimmune processes? Were Gottfries and Fluge and Mella having success with different patient groups or similar ones?
Gottfries isn’t the only psychiatrist employing a biological approach with ME/CFS. Dr. Henderson a psychiatrist in Denver, has found success using antivirals in ME/CFS. Like Gottfries, Dr. Henderson found little evidence of depression in the “treatment-resistant” depressed ME/CFS patients.
In fact a recent online survey suggests that in the U.S., at least, psychiatrists are not beating down the doors to treat ME/CFS patients. Across seven large cities few psychiatrists stated that they treated chronic fatigue syndrome. ME/CFS has been around long enough that if psychiatrists found it was a viable treatment option for them they would take it on. The survey suggested they are not.
One wonders what other Gottfries are out there – testing unusual substances – and finding them effective.
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So, the EU regulations squelched what could be an effective treatment for millions. See, it really is true that Big Government can be big and bad.
I used to be very pro EU but for the reason you cite and for other more political reasons my opinion has changed 180 degrees.
I am a 70 year old white female who has been a nurse for 47 years.
I was diagnosed with Fibromyalgia many years ago.
My condition has worsened for the past year and has rendered me incapacitated . I have severe chronic fatigue and intractable pain throughout my entire body but is worse in my upper back and arms. It is very painful to reach into the cabinets to retrieve items while preparing meals as well. I do have difficulty with ADL’S. I experience a lot of other symptoms such as severe headaches, nausea and vomiting, colon issues, pain in almost every joint . I would appreciate any advice or assistance you may have to share with me.
I am interested in being in clinical trials. Thank you. Have no a nice day and weekend.
Amen. And since it actually worked it is now a prohibited treatment.
would it be possible for an american company to make this vaccine? if they could see how much profit would be in it?
I don’t know but I imagine that anyone could. For some reason it didn’t make economic sense for that company to continue making it. I had the feeling it was an old, old vaccine. Maybe they thought it was just not good enough for Staph to make it anymore.
Fits well well with W. Tarello’s finding and treating staph in animals; I recently came to the conclusion that these staph bacteria underlie all of the different forms of FM; from ME/CFS, to Primary FM, to the tick borne illnesses. When Lyme first appeared in Connecticut, it caused arthritis (not surprising for a spirochete), not fibromyalgia. It seems a number of people with these illnesses seem to start out with “TMJ” problems during the first phase of their illness. Whether one develops ME/CFS, or Lyme or Primary FM is down to the what triggers the overall illness. In addition, it fits with Dunstan and McGregors work showing coag negative staph causing “TMJ” problems in ME/CFS and it’s often forgotten that the ME/CFS research funding committee at the NIH was dominated by dental surgeons specifically because of the prevalence of TMJ problems in ME/CFS. Too many threads of evidence coming together folks. Way too many. I think this is THE answer we have been looking for. K.
Fifty years ago, I got a Herpes Simplex 1 virus in my left eye after a scratch on my cornea from my contacts allowed it to be transferred into my eye from a fever blister on my mouth. Herpes viruses are re-occurring and I still have flares with it in my eye from time to time which have scarred my cornea and left me legally blind in that eye.
During my initial infection, I was given a series of low dose Smallpox vaccines in the hopes they would trigger my immune system to fight the similar virus in my eye.
One question: It sounds like the doctor and a few of his friends are still vaccinating themselves regularly. What are they using now that the company has stopped making it and where do they get it? Thanks!
When they stopped making the vaccine, Prof Gottfries saved enough vaccine to last for a very long time as he knew he needed it to feel well and to be able to continue his
work. He still takes it and has enough for himself. If only any company would be interested in producing this vaccine again. No money in it, though. Always comes down to money. Shame!
3 years ago a nurse noticed I had colds ores caused by herpes. She had read that the herpes is a dormant virus but if it gets into the brain then it causes fibro and ME which I have. She prescribed acyclovir. My ulcers in my mouth went within a day and my flare subsided. I took for two years my health gradually improving until a nit wit doctor asked why I was on it. He took me off, I argued so he allowed a as required dose. Now when ulcers come I take… they go and either no flare or minor flare!
These guys can be so arrogant…
The exactly same thing happened to me. Got scratch in left eye and now am blind. I have been diagnosed by dr klimas in 1993 and have two herpes virus and one that went into the eye. Figured it out myself but also I have Epstein bar. That started it. I continue to research. Definitely the vitamins b and many others o take to keep the viruses down. If I don’t take them. I get sick. I be happy to share what I have learned. I have low Igg. 500 and should be much higher. Never change as I get annual blood work and nothing changes. But I am so much better bit still have to pace myself. Happy to not be really sick. Hope you are well. Marla
Maria, I’m interested in what you learned and how you are managing the illness! Thank you!
Cort,
Please, see the book of Dr Daniel Dantini “The New Fibromyalgia Remedy” (Stop your pain now with an Antiviral Drug Regimen”) and his web site http://www.4fibromyalgia.com He “blames” several virus like Parvovirus, HSV 6, CMV and EB. Dantini also looks for delay allergies.
From my point of view his findings also suits the papers by Martinez Lavin. I mean the virus takes our ANS (autonomous nervous system) out of control because the sympathetic system becomes hyperactive (like an alarm out of control!!) Them, we have neuropathic pains (small fiber damages) etc, etc.
That doctor suggests exercise and psyco babble as a cure for CFS
Karen,
Please, see his web site, he states:
“We have successfully treated thousands of patients over the years through viral management, diet and limited exercise.”
Doctors are being told to change the exercise treatment. It is a physical illness, not psychiatric/psychological.
My rheumatologist thinks that my Immune system is “hyperactive”; I have been taking immunomodulator drug (Plaquenil) as well as an immunosuppressant (Imuran) and an antibiotic that has anti-inflammatory and immune activity (Doxycycline). This triple regimen has improved my CFS/ME significantly, although I am not cured. I have gone from bedridden for about two years to now requiring 2-4 hours bed rest each afternoon. On several occasions I have had to stop the Imuran for several weeks because of infections; each time I did this my CZfS/ME symptoms came back with a vengeance, convincing me that the Imuran is driving the efficacy of my triple drug regimen.
Well, well, well -that is very interesting Eileen. I’ve never heard of Imuran. I think you have a very good rheumatologist. What caused him to think your immune system is hyperactive? Test results? and if so can you say which ones?
So how is he still functioning if they don’t make the vaccine anymore? Thought he had to take it every month or else he relapsed?
My guess is that when they told him they were going to stop making it he loaded up on enough vaccines to last him for decades..
Yep. You’re right. He saved up enough to last for a very long time. Still takes it.
I hope Eileen can answer the questions that Cort proposed! This shared experience rings bells for me and like everyone else with our respective illness, I,m praying for a breakthrough to receive pain!!! Talk to us girl!!! Thanks ahead of time!!!
Worry about taking drugs that actually suppress immune function. At least for those of us with chronic re activated viruses or infections like EB. May be trading short term relief for long term devastation without immune defenses. .??
I agree with fear of immunosuppressants actually accelerating damage in spite of short term relief. Vitamin D is actually a hormone and also immunosuppressant. Be careful with supplements too.
Thanks Cort, for all the information you provide!
Thanks for your support Michael 🙂
http://my.meaction.net/petitions/save-the-gottfries-clinic
Wow….I had no idea – I just added it to the blog and signed the petition. Thanks for providing that.
Another obscure doctor who used vaccines to treat CFS and FM and many similar hard-to-categorise conditions, with considerable success, was Dr R. Bruce Duncan, (Wellington NZ), who has been dead for more than a decade now (and he was at least well into his 80’s when he died). In his clinic, he “poked vaccines” of all kinds at various strengths, into his patients (with their consent), trying to find the one that worked. He was famous for achieving “miracle cures” when the right vaccine at the right strength was injected. He accumulated considerable knowledge and insight of what was likely to work for each patient and condition, making the process often quite short.
There are two books he wrote on the subject.
http://www.amazon.com/R.-Bruce-Duncan/e/B001KHES28
I see with one of the books, the earlier (1993) one, there is a single copy on Amazon for $399….! Surely this book is not so highly regarded, and rare, that sellers can ask this much???? I have a copy of it myself! It is certainly crammed with information that any suitably qualified practitioner could put to use. In fact it is really too crammed and technical for the layperson.
If I knew of someone in my area who used Duncan’s protocols, I would certainly try them for a miracle FM cure.
Ha! Thanks Phil – so there’s another one. I’m not surprised. The approach made sense. Both these guys remind me of Dr. Goldstein – they just kept ploughing away until they found something that works.
Their techniques are probably just too different for many doctors to take them on – but they certainly us something about ME/CFS.
Hard to find books often fetch high prices and apparently get them…
In the 1960s went to an older doctor.His name was Dr Tyson located in Kingsville Md.He to would try many different injections.Also old Dr Phillips who finally retired at 85 years old and served Darlington Md.He was not only a primary care doc for are small town but he specialized in disease treatments and treatments for allergies.He to would try different shots to help you.I wish we still had these old time doctors.They did not fear anything or any body.They would try to help you if it was the last thing they do.
I read a previous post re having herpes virus. I have herpes and it comes on as one spot when I am really fatigued/stressed….its awful, the initial signs being stabbing pain and then localised pain for days until it appears and then waiting for it to die away. Does anyone else have this problem, as I have read it is common in ME?CFS?
Yes, I do.
Thanks Cort and all other responders for the info. and comments. Brain not working, hard to get to a thought, but thanks for providing Dr. Henderson’s name. I looked him up and think I can make an appointment. Didn’t know there were any docs in my area and I’ve looked a long time.
Doesn’t this contradict the use of Rituximab?
I think that two possibilities explain why we see the palliative reactions to the vaccine as well as rtx. If ME/CFS is a virus of the CNS, then the boosted immune system from the vaccine will suppress it, at least temporarily, while the cleansing of B cells by rtx will temporarily relieve the symptoms due to immune system suppression. If ME/CFS is a virus of the B cells, then the vaccine will suppress it for a while, but the rtx B cell regeneration process may actually succeed in wiping it out permanently in some cases.
All ME/CFS sufferers should be asked to register to donate their bodies after death to research.
Thanks David.
Thanks for this fascinating writeup. So he thinks by boosting the immune system, antibodies neutralized toxic antigens from the bacteria? This would track with how and why IVIG often helps–and it only lasts 3-4 weeks (as they are passive antibodies).
What about BCG? I think I was reading recently it can treat Type 1 diabetes. Maybe that would work.
I was diagnosed in late 1990 in Australia with CFS by a doctor who had had some experience with it. He was working as a GP while waiting to set up a new clinic in a prestigious hospital. It was to be a Healthcheck clinic, looking at mature people (often executives) to see impending problems and catch them early on. He had also worked in the fields of sports medicine and airlines. (This is to tell you his background.)
In early 1993 I was quite down and he proposed a course of common injections in an attempt to boost my immune system. One of them definitely helped, but I can’t remember which. It may have been typhoid. Shortly after that I moved to the UK. It was not a treatment that continued.
This is from Diane:
I sufferred with Herpes Simplex 1 in my early twenties…40 years ago! I am now 61 yes of age. This virus knocked me for a loop back then and just came on me with a vengeance seemed like very quickly right after my husband had an affair and left me and my daughter,Stephanie, age 2 at the time! Broke out with blisters ALL over in my mouth so bad I couldn’t swallow! Over the years from that time did have bad outbreaks with flu like symptoms…but lessened some in the last 10 years or so!
In my thirties I came down with Chronic Fatigue Syndrome, Epstein Barr after being diagnosed with Pneumonia.
In my forties I contracted Lyme Disease was hospitalized a few times over the course of a couple of years as this disease was debilitating and needed IV Antibiotics (Rocephin)in order to survive this Deer Tick Bite. Was, of course,given oral antibiotics for many months after my hospital stay.
Also in my forties was diagnosed with Psoriatic Arthritis and decided to just take my pain medication Tramadol instead of the alternatives of the other drugs offered to me that were,in my opinion, were not only dangerous to take on a daily basis,but also would have been impossible for me to take and still be able to hold down my Executive position in New York. I had a 15 year old child to support at the time.
Now 61 years of age was just diagnosed with LUPUS an AUTOIMMUNE DISEASE. All these aforementioned viruses and Inflammatory Diseases I contracted over time, I believe turned into this debilitating disease. I had to take Methotrexate a chemo type drug that tries to stave off the damage that this Inflammatory disease does to your whole system with the horrible side effects to boot.
Bottom line, reading Dr. Gottfries story really gave me some hope explaining how he was able to continue living a better life with monthly shots of Staphylococcus that gave him some of his energy back. I no longer take Methotrexate which can cause cancer. I asked for monthly IV Vitamin Infusions…with all the B Vitamins, Magnesium and Vitamin C plus a B-12 shot.
What I would like to know what is the maximum amount of B-12 MY BODY WOULD ALLOW. I am 200 lbs and 5’6. Also, I take about 5,000 mcg daily. Is folate the same thing? Also, what other vitamins should I be taking to help with this Inflammatory disease? I eat lots of garlic, yogurt, fish, broccoli,cauliflower, sunflower seeds, walnuts, Almond milk, Blueberries and Bananas! What other foods will help me stave off this debilitating disease Lupus?
I await your reply,
Regards,
Diane Simmons
I would love to know WHEN he started to vaccine him-self ( before or after the 3 firsts years of ME/CFS ??)
Boy From what I read it sounded like he started testing vaccines pretty quickly and discovered the one that worked for him about 3 years in….
It really makes sence, I started with a Staphycocolutis A infection, that also damaged my kidneys, MRSA, pneumonia, Ebv, reactive arthritis, it makes sence if I started with a staph infection, that a anti staphycocolutis A. Shot would help it from continuing to travel through my body, causing more damage though out my system.
I wish I could have the shot..they should remake it….maybe we could petition the fad or company that originally made it, to reproduce it….it’s a viable option.
When there aren’t really any, I’ve tried alot of different treatments, but I know my immune system is out of wack…all my co morbid illnesses are immune related…As our bodies continue fighting, we continue getting sicker and sicker….maybe just maybe , our country will take our lost years, and suffering seriously enough, to let us make our own choices in treatment? I’m in RI, where there’s very little help or knowledge on the subject..
I signed it…
I treat holistically with a Naturopath using Eastern Medicine; acupuncture, chinese herbs and sometimes homeopathy. Prior to my routine acupuncture treatment, she feels my pulses. She always comments about my immune system. Sometimes it is barely functioning and sometimes it is hyperactive (as Eileen mentioned). She says the times it is hyperactive is when the EB and/or CMV are activating. It is also during this period of time that my energy is struggling. She explains the extra fatigue comes from the immune system being busy fighting the virus(es). Similar to when a healthy person gets the flu. The immune system is one thing she focuses on treating, saying her theory is to get the immune system functioning optimally so that it is strong enough to make the viruses totally dormant again. Earlier this year I was also diagnosed with Lyme, so the immune system is also busy fighting that, which may explain the hyperactivity.
As a side note, my mother has Lupus and takes Imuran and Plaquenil daily, saying the Plaquenil is what made her finally feel better. My Rheumatologist had prescribed it for me, but I was scared to take it since it can affect the vision and I already have problems from 3 years on Topomax for migraines. Also, Doxycycline is one of the antibiotics used for Lyme Disease. I, myself, had a temporary remission from symptoms when I first became sick, and had a 3 day course of Cipro for a suspected UTI. No one has ever “listened to me” when I tell them that, and of course with the horrible side effects that Cipro, I am not totally willing to test that rx again.
I hope all patients with CFS have seen Dr. NANCY KLIMAS request for DNA raw data for gene mutation analysis.
I am very hopeful about this research.
contact MECFSGenes@Nova.edu. Any raw genetic data on file by companies such as 23andMe for ancestry or genetic content can be used with permission of the donor.
Hello,
my name is Phil. I am 29 and from Stuttgart Germany. I have been dominated by CFS or a CFS like disease for more than 10 years now. So I followed this thread with great interest. Although I have some additional CFS atypical but idiopathic symptoms like Dysgeusia and intracranial hypertension my focus on bacteria as potential trigger for CFS was set when another medical Odyssee revealed that my blood results indicate that I have the so called Antiphospholipid Syndrome(APS). Well another diagnosis which just didnt fit into a global picture. The APS is beeing diagnosed by checking the so called beta-2-glycoprotein and Cardiolipin antibodies levels. So in my case, there where both elevated which is actually indicating that there is something going on. But the APS is actually also identified by its clinical signs like thrombosis, which was just not present in my system . So what the hag was going on? Well actually this diagnosis came in February 2016, so Iam still at the beginning of revealing potential links to CFS. What I did so far was checking the epitop protein sequence which the beta-2 glycoprotein antibody recognizes against the ncbi protein database. This revealed high similarity to membrane protein of Staphylococcus. So am I chronical infected with a Staphylococcus strain? The answer is still pending because I have not yet found a doc with scientific ambitions helping me to test this hypothesis. Although there are several additional hints for bacteria beeing involved, like the fact that a antibiotic ciprofloxacin treatment in the past had reduced my symptoms for several days.
Unfortunately scientific papers describing CFS/bacteria associations are rare. Rare but not not evident! Unfortunately no high impact papers but still indicating that there is room for research because I believe in the very basic scientific credo that to skip a hypothesis it needs to be falsified.
Please tell what you think about this findings. Maybe we can help our selves.
How interesting Hag! Have you checked out David Berg’s papers on CFS? He believed ME/CFS was a version of APS. Dr. Holtorf still finds heparin, I believe, it is to be one of his more effective treatments. Look on the web for more about Berg and ME/CFS – he got a lot of attention at one point. I believe he passed away a couple of years ago.
http://www.ncbi.nlm.nih.gov/pubmed/10695770
Activation of the coagulation system in Gulf War Illness: a potential pathophysiologic link with chronic fatigue syndrome. A laboratory approach to diagnosis.
Hannan KL, Berg DE, Baumzweiger W, Harrison HH, Berg LH, Ramirez R, Nichols D.
Blood Coagul Fibrinolysis. 2000 Oct;11(7):673-8.
After then years this is really one of these personal not from this earth Wow Moments!
Thank you so much for the paper! The author was unknown to me.
So there found a significant between CFS and APS. This is amazing! I just went through it and noticed that they even treatet the patients with anticogulativa. Well this is how they did to me. They gave me a two months daily injection of fondaparinux. My coagulation parameters were normalized but my CFS like symptoms and the APS antibodies remained on an high level. Berg et al. in the above mentioned study also reported about the normalisation of the coagulation parameters but miss to give information about the evolution of patients CFS symptoms after treatment. Do you perhaps have additional information on this issue? Because if patients did not have beneficial CFS reducing effects from treatment this for me seems another hint that the autimmunic repsonse is an sideffect which camouflages an chronic microbial disease. As I said in my prior post CFS/bacteria(not molecular mimicry but ongoing infection) papers are rare or on the edge to magic pseudo science.
Nevertheless in Germany we say: You have to work with what you have.
Feel free to check this sources:
http://www.ncbi.nlm.nih.gov/pubmed/11440190
http://www.sciencedirect.com/science/article/pii/S0147957101000121
read: MEDICAL MEDIUM: secrets behind chronic illnesses and h ow to FINALLY heal, Anthony William. also, his other bk re the Liver….also ANCESTRAL SUPPLEMENTS.COM. I did genetic testing/Yasko,PhD too and too her supps until Ancestral Supps. FINALLY DOING WELL!..AT AGE 81
What if there never ever was a Virus or Bacteria involved in this condition & all of the talks were just a waste of time & we had some undiagnosed condition all along, I know one thing certain if I am not on Vitamin D3 or B12 or folic acid & Cortef I am
fighting for my life & if I eat certain foods or around certain smells I am on Deaths bed fighting to stay alive now…Ron Davis just recently mentioned a Woman fully recovered running 10 miles every day from an antibiotic he even said his test
becomes normal with an antibiotic but he will not reveal what this or these antibiotics are & I find that really not acceptable at all I thought they were the Open Medicine Foundation? What’s the big Secret of not letting this out now? Makes no
sense at all to me & what happened to the big talk he had in London on East African Sleeping Sickness as the cause or is it just talk? Not Happy when people suppress knowledge especially when people are dying daily from this horrible Disease & Yes
it is a Disease one that has been neglected for decades now. One thing certain though & I have said this countless time we have Antibodies, not infections unless we have iron overload not tested or the Genetic hand me down the type of TB from
our Mother at Birth or GSD 13 or GSD 5 all along
Mother at Birth or it is all along Eagle Syndrome undiagnosed or even GSD 13 or GSD 5 all alomg
Apparently MD’s that send their patients for psychiatric treatment because they are unable to obtain a diagnosis runs amuck not only in the USA but throughout the world. This is a great article and I applaud Dr. Gottfries and Dr. Henderson for thinking outside the box. These are true scientists with a passion and commitment to healing patients. Bravo
Should ME/CFS patients take the covid-19 vaccin? Any evidence it could lead to a relapse?
Check out the vaccine side effects polls on Health Rising. Most people are doing fine and some are having a rough time.
Thank you for the response. I will check out the polls. Take care and be safe.
On the topic of vaccines, third day after Shingrix, I just made icebox cake for the first time in seven months. Stood on tiptoes to reach up into cabinets. Loaded dishwasher, sorted some papers. Incredible for me. No shaking post-exertion, no restless leg.
I feel both wonderful and absolutely nauseatingly furious. Because the same thing happened with the Moderna booster, but none of my four Pfizer jabs. ME and LC are treatable, real, physical diseases. A little research into this course of treatment could change so many lives.
Fascinating! There’s the immune system in action. Hopefully, long COVID research will help figure out what’s going on there.