On September 11th 1998, pediatrician Dr Michael Goldberg came to the Royal North Shore Hospital to speak about his experiences and ideas about Chronic Fatigue Syndrome and its connection with Attention Deficit Disorder and Autism, his proposal for a name change, and to discuss his treatment regime.
What started Dr Goldberg's interest in CFS was that in the early 1980s his wife became ill. She suffered from cognitive dysfunction, short term memory loss, decreased processing ability, and abnormal sleep patterns. She had high Epstein-Barr Virus titers, with a cranked up immune system. Then he started having children coming into his practice with similar symptoms, who would "conk out" at around 3pm.
CFS has only been labelled in the last 16 years and only been accepted as physiological or "real" very recently. Dr Goldberg suggests that many illnesses now labelled "psychological" may in fact have an physiological basis. In the last 15-20 years, the medical profession has considered schizophrenia, Alzheimer's syndrome, and various other "mental" disorders as autoimmune mediated physiological illnesses.
The SPECT scan is Dr Goldberg's smoking gun of the physiological nature of CFS , the fact that temporal lobe dysfuction is at the heart of the illness and is central to his argument for a link between CFS, autism and Attention Deficit disorder. A Single Photon Emission Computer Tomography (SPECT) scan of the brain shows the pattern of blood flowing in a living brain.
CFS patients show abnormal SPECT brain scans. The scans reveal a dimunition of blood flow - hypoperfusion - in the temporal lobe, occipital parietal lobes, and the cerebellum. He sees a scalloping and thinning in some cases, and abnormal brain waves. Magnetic Resonance Imaging (MRI) and X-ray Computer Tomography scans (3D x-ray CT scans) appear normal for most CFS patients.
The left temporal lobe is involved with auditory processing and language, so naturally a decreased left temporal lobe function will result in sound sensitivity and language problems. The right temporal lobe is involved with social skills. The temporal lobes also regulate and coordinate the frontal lobes of the brain.
Dr Goldberg believes there is an overlap of symptoms and findings connecting autism, Attention Deficit Disorder, and Chronic Fatigue Syndrome. He believes they are the same phenomena, striking the brain at different stages of development. Simply put, immature brains get autism, young brains get ADD and adult brains get CFS. Unfortunately this hypothesis doesn't appear to take into account childhood CFS that isn't ADD.
Dr Goldberg suggests that CFS and all these illnesses should be renamed "Neuro-Immune Dysufuction Syndrome" - NIDS. Dr Goldberg observes that "Austistic Syndrome" and CFIDS and the other NIDS all involve a "thinning of the brain". How your brain adjusts to the physiological changes and therefore what symptoms you will suffer then largely depend at what age this illness strikes. During his talk, Dr Goldberg illustrated his points with many SPECT scans, which correlated with the problems the patients had, and which also reflected the improvements the patients made when their symptoms improved.
In 50%-70% of ADHD (attention deficit hyperactivity disorder) cases, it continues to present problems past adolescence. This has only been recognized in the medical literature in the past fifteen years.
Previously, in the 1960s and 1970s ADD kids were described as very bright but hyperactive children, who if you could only get them to sit still in their seat, would perform brilliantly. Children labelled with ADD from the 1980s to the present are described as presenting with meta-cognitive deficits, problems accessing information, using developmental assessment, they now consider that they are looking at a large number of learning disabled children who have speech and language difficulties, deficits in cognitive and perceptual thought, including "temporal lobe sequencing deficits", discretional disorientation and visual perception difficulties, deficits in intersensory integration, clumsiness. These problems were never associated with ADD in the past, but they are frequently discussed in the world of CFS and autism.
Previously autism was thought to be a rare and devastating handicap that affects 2 in 10 000. Now, from the 1980s onward, it is found that many kids don't fit this profile very well, but have been classified that way for convenience.
All these illnesses are linked to an immune disregulatory phenomenon. Whether caused by a virus or a genetic predisposition, or environmental changes. Commonly there is a family history of migraines, eczema, hay fever, asthma and other autoimmune disorders. He has seen dozens of families where the mother or father has CFS, an older child with ADD, and a younger child or two with autism/PDD. This was unheard of in medical discussions 20 or 30 years ago. There is a predictive pattern of allergies, sinusitis, pharyngitis, bronchitis, and recurrent minor illnesses.
At UCLA Dr Goldberg saw autistic children with immune related symptoms which were regarded as unimportant "epiphenomena". He hypothesized that if you do the cause of CFS to a young developing brain, then you get autism, the "young version of CFS". Austistic children also have hypoperfusion in the temporal lobes showing on SPECT scans. He suggests that if the brain "misses" certain stages of development, at some point, it may never make up for that fully. He hypothesizes that "quiet ADD" is actually misdiagnosed CFS.
Dr Goldberg's hypothesis is that all these illnesses are a result of temporal lobe dysfunction. Therefore they should be labled as Neuro-immune dysfunction syndromes - NIDS.
"Neuro-immune" is the new buzzword in the US National Institute of Health, and its now being applied to Touret's syndrome, and obsessive-compulsive behaviour. The press have jumped onto the environmental illness bandwagon. Interest in HIV has finally led to interest in the workings of the immune system, and all of this should help with CFS. Ultimately, the tools that regulate HIV may help regulate CFS.
The trouble is, without controlled trials based on definable markers, everyone disputes everything that is being published. This is the basis of the loudest criticism of Dr Goldberg's work on CFS, and why many CFS specialists won't act on his findings. Dr Goldberg wants to see urgent controlled trials, definable markers and recognition of the illness by neurologists.
Dr Goldberg has seen the symptoms of a "turned on" immune system in allergic reactions to a food allergy screen where all results were shifted to the right of the table. That is, even where there were no allergies, there were increased immune responses, so that the table looked normal, but shifted to the right, towards an increased allegic reaction.
Dr Goldberg says what he observes are not classic allergies, but "triggers", and warns against milk, dairy products, chocolate, whole grains and whole wheat. He hypothesizes that the various immune abnormalities are from a metabolic abnormality, which in turn has led to an immune problem and mitochondrial dysfuction.
Other physiological evidence he has seen is that red blood cells from people with CFS don't separate in serum they way they do in people without NIDS.
Dr Goldberg had several suggestions, from his practice, of ways to improve cognition. He suggests modified elimination diets, antifungal therapies, and antiviral/immune active therapies.
"Healthy" foods from health food shops may be a large part of the problem he says, and we should avoid health food shops. If people with CFS take this advice, the health food industry will lose large amounts of money! Gastro-intestinal immune problems are a result of "health food" consumption he says. He encourages patients to go back to basics and eat proteins, vegetables and low carbohydrates, and not go to the health food shops for alternatives. For the diet he suggests that safe fruits include pears, peaches, apples and bannanas. Fish and pork may be triggers, but red meat otherwise should be safe. The amino acids in health food stores are NOT pharmaceutical grade, and therefore are of little use in treatment. Dr Goldberg recommends keeping kids away from allergenic food for the first three years of live to avoid triggering NIDS symptoms in genetically susceptible families.
Dr Goldberg says that kutapressin, a drug made from pig's liver, is an extremely effective treatment for CFS cognitive problems. It was licensed in the late 1940s for cold sores, shingles and other herpes viruses. It was licensed to treat acne and other chronic viricological inflammations. Kutapressin is an enzyme that chops every herpes viruses into little pieces. Patients who have tried it say that it felt like "somebody threw a light switch". Kutapressin is extremely safe except in cases of allergy. Allergy is tested for by a skin test before treatment. Kutapressin is given by intramuscular injection in the thigh or buttocks. Due to the fact that the patents have run out, it is unlikely more commercial research will be performed with kutapressin. However in his practice it has made an enormous difference to the blood flow in the brain as displayed on a SPECT scan. In fact after treatment the SPECT scan shows normal blood flow. It is not a panacea for CFS, but a very valuable tool, that could point the way to better tools.
For anti-viral treatment, valtrax, zovirax, acyclovir are safe in the long term, and their use is suggested by high IgG levels. They attack the herpes viruses Cytomegalovirus and Epstein Barr virus which cause glandular fever. Valtrax is the cheaper and more effective drug. Valtrax and zovirax are safe for children with CFS, and he has given them to children in his practice. "They brightened up, became more functional and more tuned in." He found that these were safe medicines for them, and that they improved their symptoms while on the drugs and were worse when taken off them. He says that photophobia is a marker of a viral infection.
If your doctor gives you a choice of antibiotics, then erythromycin is the one he recommends you choose, as instead of killing bacteria and thus releasing their toxic load into the body, it simply paralyses the bacteria, allowing the body to flush them out safely and cleanly.
He treats patients for yeast infections after a liver function test with nyseral or dyflucan, and that there is no test for yeast overgrowth. The kill-off of yeast leads to an achiness, and headaches which last for two weeks before the patient feels better. Lamasal is a new long term treatment. Amphoterosyn B is safe in the long term when its taken orally as its not absorbed by the gut, whereas intravenously it is toxic.
SSRI (Serotonin Re-uptake Inhibitors) such as prozac, paxil, zoloft, at very low dosage are recommended from his work on the temporal lobe to help with sleep problems.
Dr Goldberg worries that in cases where there is a low blood perfusion in the brain of NIDS patients, that there will be a slow loss of brain cells by slow starvation of blood.
Dr Goldberg believes that NIDS occurs in people who have inherited a genetic susceptibility, and that these genes run in higher IQ families, which is why it was first observed as "yuppie flu". After all, what are yuppies? They are university educated, intelligent, bright people. He believes there is a "higher evolutionary connection". Human evolution has been led by the fact that humans have been breeding for success in society, success which requires higher cognition - which means higher brain function. Selecting for successful high IQ as he believes humans have been doing for millenia, has led to more immune sensitive individuals.
A virus such as the common cold does not infect your brain, but makes you feel spacey, tired and your body will ache due to the cytokines and interlukins that your immune system produces that do get into your brain. Dr Goldberg hypothesizes that during times of stress, trauma, and infection, the immune system has evolved to protect the brain by slowing down the flow of infected blood to the brain. However, when this protective mechanism does not switch off after a week, but continues on, then you end up with the symptoms typical of CFS.
This extends my famous "PWC Master Race Theory". Briefly, People With CFS (PWC) learn many tricks to cope with symptoms of muscle weakness, clumsiness, exhaustion, memory and concentration problems, lack of endurance, pain, and so on. You need an unusually flexible mind to be able to cope. When cured of CFS, people with these tricks - these methods of making more of a reduced brain and body - will be able to apply these coping techniques to a healthy brain and body and thus will be superior human beings. Naturally we will take over the world. I did not explain this to Dr Goldberg, no sense in scaring the poor fellow.
Neuro-Immune Dysfuction Sydnrome is the most descriptive of all the name changes I have so far seen suggested. If Dr Goldberg is right about the connection between CFS, autism and ADD, and his name change is adopted, then we can dispense with "chronic fatigue" at last, and if misguided media person tries to call our illness "yuppie flu", we can tell them "NIDS to you!"