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Carl-Gerhard Gottfries: A Swedish Chronic Fatigue Syndrome Story
Friday 27 November 2015
Carl-Gerhard Gottfries: A Swedish Chronic Fatigue Syndrome Story
“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.
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 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.
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.
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
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
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 andGerman 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.
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?
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.
The above, with comments, originally appeared here.
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