Recently in Chronic Fatigue Syndrome

Searching for Octopus bush

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Velvet Soldierbush / Heliotropium foertherianu...

Velvet Soldierbush / Heliotropium foertherianum / 紋羽の木(モンパノキ) (Photo credit: TANAKA Juuyoh (田中十洋))

structure of rosmarinic acid

structure of rosmarinic acid (Photo credit: Wikipedia)

As I wrote earlier, Heliotropium foertherianum or Octopus Bush is a traditional remedy for Ciguatera Fish Poisoning that was scientifically tested in assays last year as effective against the toxin. While it hasn't been through the clinical trials that would show that it was definitely effective, as a native Australian plant its listed as bush tucker, so its not toxic.

Given that its not toxic, I've discussed this with my doctor, and I'd like to try the remedy of Octopus bush leaves boiled up as a tea. I am concerned about what will happen in my body if the toxin is dislodged as described in the paper, but its the only treatment on offer. The researchers in France are interested that the active compound in Octopus bush is similar to rosmarinic acid which they know how to make, so they've patented the use of rosmarinic acid for treating Ciguatera Fish Poisoning. I'd like to interview them, I hope they speak English.

A fellow CFP sufferer on facebook is trying rosmarinic acid supplements that are extracted from Rosemary, because its available. My problem is that the amounts of rosmarinic acid in the supplements are tiny. I'm after a medically active dose.

So I'm looking for sources of Octopus Bush itself, as I'd rather try the remedy that was proved to work. In the best of all possible worlds I'd wait for the clinical trials to be initiated, funded and completed, and for all the medicinal interactions to be mapped. However I've been sick ten years, and I'm recovering from a really vicious relapse that's lasted 12 months.

I can't find any sales of this plant or its extracts after exhaustive searches, so I've written to the Royal Botannical Gardens and the CSIRO for help. They've directed me to the Australian Tropical Herbarium, and the Northern Territory Herbarium . I'll send my request, and keep eating the rosemary.

Professor Thomas Borody interview

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Clostridium difficile

Clostridium difficile (Photo credit: AJC1)

download MP3

Professor Thomas Borody of the Center for Digestive Diseases is researching which illnesses are caused by the bacteria in the bowel going wrong, and developing bacterial therapies to restore health. In 1999 I spoke to him about how bowel flora affects the brain, and the triple-S, sick flora syndrome.

Since that time research around the world has started to catch up, and for one illness at least, clostridium difficile infection, this poo transplant will become the standard treatment. Other illnesses may follow.

Related articles

Reef Or Madness

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Reef or Madness from ilum - Julie Hollenbeck on Vimeo.

A 16 minute film about Ciguatera Fish Poisoning created By Julie Hollenbeck, Mark Newbill and Ray Trujillo, Jr.

Ciguatera, the most reported "seafood toxin illness in the world" that a majority of the planet has never heard of, infects hundreds of thousands of people a year, some of whose very will to live is tested by the devastating and debilitating chronic neurological affects of the fish-borne toxin.

"Reef or Madness" a short documentary film by University of Miami Marine Affairs and Policy students Julie Hollenbeck and Mark Newbill, that recounts the struggle of chronic Ciguatera sufferers who seek to regain some semblance of their healthy and productive lives following Ciguatera infection and the incapacitating symptoms that can last for years. While Ciguatera is a recognized medical illness, many marine toxin specialists have yet to agree on how long people may suffer with the symptoms of the fish poison, leaving long-term chronic sufferers to feel as if they're more crazy than sick. Their families and physicians wondering the same. "Reef or Madness" will give a "voice" to the sufferers of chronic Ciguatera, who face doubt, confusion and scorn from themselves, their families and friends as well as the medical and scientific communities.

If people knew that the fish they're about to eat is like playing Russian roulette with their health, they might think twice before taking that first bite.

This film was created for $143 using personal, leveraged and collaborative resources.
Marlie Productions, 2010 ©

Zombie Fish poison! Associate Professor Graham Nicholson from the department of molecular and medical biosciences in the faculty of science at the University of Technology, Sydney spoke with Ian Woolf about the tropical fish disease Ciguatera and the fish you eat to consume the poison.
Download MP3


New Scientist response podcast

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Here's a podcast of my response to the New Scientist headlines about "How People Can Think Themselves Sick - how chronic fatigue syndromes are triggered by people's mindset".

New Scientist have just published an interview with psychiatrist Simon Wessely with the irresponsible headline "When illness is mostly in the mind" which is advertised in their email PR as "How People Can Think Themselves Sick - how chronic fatigue syndromes are triggered by people's mindset"

I immediately wrote a comment about the unscientific interpretation of the data which I'll reproduce here.
His list of published work is here:on pubmed

I don't know which research he refers to in the interview.

Simon Wessley And CFS Sufferers Hurt By Wrong Headline

Simon has only shown that 33% of patients have recovered from CFS without knowing it and are merely de-conditioned from CFS, and 33% have been over-cautious with an illness that gives time-delayed feedback to activity, while the remaining 33% are managing their CFS exactly right and have no detectable psychiatric problem. At best 33% are "thinking themselves sick". There's nothing new in this, but it does prove that CBT and graded exercise doesn't cure 66% of CFS. If his research is correct.

 I notice that Simon Wessley never uses the phrase "mostly in the mind", and in fact never in the interview says that CFS is "triggered by a mindset." Where do these exaggerations come from?. Sadly its the exaggerated headlines and summaries that people will remember, not the carefully worded answers given in the interview.

One counter-example is all that is necessary to prove a scientific theory wrong. 66% of patients are not cured by CBT and graded exercise, therefore the theory is wrong. 33% not only aren't helped, but they are likely to have been MADE SERIOUSLY WORSE by the application of CBT and graded exercise. Given that this is the defining symptom of the diagnosis of CFS, why wasn't the question asked? How many people were hurt by being made to do exercise that made them sicker? 33% is a high number, and can't be dismissed the way Simon appears to.

His own research proves that his theory is wrong for 66% of patients. He should interpret this to mean that there are a small sub-set of people who have recovered from CFS and can be helped by CBT and graded exercise, and the remainder are sick for reasons his theory can't explain. Only half of those who don't recover respond to graded exercise and CBT with "good improvement", and half do not respond well to this treatment. This would be an accurate and fair interpretation that would not lead to CBT and graded exercise being the "cure" for all.

Whoever chose the headline and the short summary that appeared in the New Scientist PR email should apologize to both CFS sufferers and Simon Wessley for misleading everyone.

Dr Stephen Graves CFS interview

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Dr Stephen Graves, Director of Hunter Area Pathology and the Australian Rickettsial Reference Laboratory spoke with me about the Chronic Fatigue Syndrome Conference held in Cambridge in July 2008. What is Chronic Fatigue Syndrome? What are the causes, and what is it like to be struck down by the illness? Why is it still the invisible illness so many years after its discovery in the 1980s?

The interview was broadcast on Diffusion Science Radio on 2SER on the 4th of August 2008 You can download the whole show here.

Go with the FLO

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My ENT doctor had me try FLO Post Sinus and Nasal surgery wash. You mix some powder with boiled water to make something like your body's extra cellular fluid, and squirt it up your nose. It got rid of sinus infections within 3 days without antibiotics. Its done such a good job of looking after my sinuses that my overall health has improved a lot. I think the lack of sinus inflammation has been good for my immune system and my nervous system.

After a month, I'm addicted to the health benefits. I can see myself using this as a long term treatment. Its so rare to find something that works after all these years.

Deceptive Truth podcast

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Magicians exploit the flaws in our perceptions to create entertaining illusions. Deception is a part of all human societies, and its believed that deceiving other people is where we learn our theory of mind. Are politicians the only people who have taken these skills from the stage and into real life? I put on my top hat and take my magic wand to investigate CFS research and invisibility.

Magick and Psychic Influence Banner 1

Mutton dressed as Lamb

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I'm told that while I was out at 2SER on Thursday night, every TV news station carried a video bite of Professor
Llloyd's hypothesis that Chronic Fatigue Sydnrome (and Fibromyalgia) is possibly caused by brain injury after glandular fever or similar virus. Apparently the footage showed patients being brain scanned, and the suggestion that they'd found the cause. The story is all over the ABC and other sites, but there's nothing new that I could see.

Now, its been known since the 1990's that Chronic Fatigue Syndrome (and Fibromyalgia) happens to some people after an Epstein Barr Virus or "mononucleosis" infection (or Ross River fever or Q Fever), but that not everybody who is infected gets CFS and not every CFS sufferer has been infected with Epstein Barr virus. The brain scans are planned for the future, they haven't been performed yet, after all this time. The TV footage seemed to be misleading. So what's new?

I've sent a list of questions that the press release and the new research paper didn't answer to the media liason at UNSW. The media liason told me he'd pass my questions on to the Professor, but I was never sent any answers.

It would be amazing to see research that goes one step beyond confirming every year that CFS is not a delusion.

Last straw with Telstra

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I just had a conversation with a Telstra employee about my increased bill. They claim that they have no record of me ever having a pension. I spoke to a Telstra sales person just last week who looked up my records and confirmed my pensioner discount. And very week for months I've been bothered by phone plan people, even door-to-door.

Telstra now say that they only give the Pensioner discount to customers who have long distance and local calls with them. So I don't get a discount anymore. They also claim this has been the case for two years. When I complained that I was never notified, they go back to saying their records show me as working for (get this): "Gab Prior and Matt".

When I first acquired this landline, I was in a share house with Gabrielle and Matthew, I wasn't working for them! Obviously their databases are corrupt, and totally trusted. The phone guy tried to persuade me that I'd never spoken with Telstra or written to them with my pension number, because it wasn't in the database.

So if there's no pensioner discount, and the line rental is outrageously higher (the copper was paid for decades ago), then there is no longer any point in dealing with Telstra. I refuse to make a deal over the phone or door to door. I need to see the figures on paper to see that any new plan is a better bargain than what I'm paying.

Telstra just changed from monthly to 3-monthly billing in advance. So my bill went up 3 times. If they're going to bill ahead instead of behind, then they are no better than the ISPs. They warned in their letter about the quarterly billing, but NOT about billing in advance.

I notice I'm still being charged $3 per month for the crappy ten year old phone they supplied. What a complete rip-off. Its somehow more blatantly offensive now that they're charging me three months in advance.

I haven't seen any evidence of any other company offering a Pensioner discount, but I might start asking for it from every phone plan scam artist. Sadly they will never commit their promises to paper.

For $60 per year, I may as well have a phone that does Skype and webcam.

Karaoke Therapy

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I accidentally ingested neurotoxins from tropical fish in December 2002, on a locally delivered pizza. Amongst the bizarre Ciguatera symptoms was "Mild Aphasia", including changes to my voice. I sounded terrible. I wasn't able to convey emotions in the tonality of my voice, and I often slurred my words or went quiet. The professional speech therapists took two looks down my throat and told me they couldn't see me using my voice wrongly. So I've had to do the Mad Scientist thing and experiment on myself, after reading up on neurology and immunology and toxicology.

I figured that if singing activated a different part of the brain for people who stutter and helps them speak clearly, it may also help with my voice changes. A different neural pathway sounded like exactly what I need. Singing is all about conveying emotions in the changing tonality of your voice.

So I downloaded EvilLyrics and winamp, and sing along at home. I have a bad memory for lyrics, but with EvilLyrics downloading them and displaying them in front of me for every song; I could sing. Nobody had to hear me. Mysteriously, my voice was remarkably richer the next day.

Thus Karaoke therapy was born. I suspect the fact that I'm trying to match the singer's timing, pronunciation and inflection are part of what makes a difference. In primary school, I used to be part of a school choir. We sang at the Sydney Opera House. I think singing with another voice, gives feedback for me to make corrections to my singing.

It seems to give me the best results if I sing for up to an hour, as part of my preparing for sleep rituals. Too little time has less effect. If I miss it for too many days, then my voice reverts to poor, high montonal, and faint.

I'm experimenting further to see if I can refine it and get better results. Certainly listening to my mp3 radio pieces, the changes are clear.

I have no medical qualifications, I'm just giving myself technical support for a black box problem that the experts have given up on. This seems to work for me, I hope if you have suffered the same symptoms, that it works for you. If nothing else, Karaoke is fun!

NIDS to you

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Dr Goldberg's website is at and contains an essay about CFS.

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!"

Ciguatera follow-up

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In April 2004, Ian Woolf reported how the fish we eat in Australia can be contaminated with Ciguatera poison, one of the poisons used in Haiti along with puffer fish and toad poison to make real Zombies. In a Discovery follow-up, Ian asks what is being done to protect us from Ciguatera.


Tongue Twister

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I recently discovered that Woolworths sell my childhood favourite cake: Hedgehog Slice. In North American, its like crushed cookies swirled into a coconut chocolate fudge brownie with chocolate icing. Sadly, some baking companies also label this as "chocolate fudge", which is a completely different confection. I faithfully followed a "chocolate fudge" recipe when I was very small, perhaps six, and was bitterly disappointed that when I finished, I didn't end up with Hedgehog slice. Scarred me for life. My mother still teases me by buying me actual chocolate fudge occasionally... I found a cooking free receipe at Most of the receipies on the web wrongly instruct you to mix in some kind of nuts, which ruins the whole endeavour. Shredded coconut should be the closest any kind of nut gets to my hedgehog slice. The things that LOOK like nuts are actually biscut pieces. This has prompted a tongue twister, which bodes well for the healing of the ciguatera poison induced damage to my speech centres: "How many eggs would a hedgehog hog if a hedgehog could hog eggs?"

Ciguatera Zombie Poison

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In Haiti, Voudon sorcerers mix up Zombie making powder that works largely because of two nerve poisons found in the puffer fish used in the recipie. Ciguatoxin, which blocks the calcium electrochemical channels in nerve cells, and tetradotoxin which blocks the sodium channels.

Ciguatoxin is a water and fat soluble protein that isn't restricted to puffer fish, its also made by dinoflagellate protozoa - micro-organisms that attach themselves to algae that grow on dead, damaged or dying pacfic coral reefs. Small fish eat the toxin-salted algae, and are eaten by larger and larger predator fish. The poison is concentrated in each step up the food chain. By the time you get to big fish like the skipjack tuna used in fish oil supplements, or barramundi, coral trout, sea perch, mullet, cod, red snapper, and mackeral, (to name a few) that you may choose for your dinner table; there's enough poison not to make you a zombie, but to make you suddenly and dramatically ill.

I should know, it happened to me just over a year ago.

Nobody returns from Narrabri

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I graduated from my Applied Physics degree with Computing Science sub-major, and applied for a job as a scientific programmer with the Ionospheric Prediction Service in Chatswood.

I knew about the 11 year sunspot cyle, so they hired me as a solar astronomer instead, as a replacement for the incumbent astronomer who was tired of the simple life in the outback. I gave up on my patent office job interview, and accepted the post. I had two weeks to move there from Sydney.

They observe the sun from the Culgoora Observatory outside of Narrabri, and make predictions about what the sunspots will do, and how they will effect the ionosphere and its ability to reflect radio waves back to Earth, and hard radiation that will be experienced by satellites and astronauts during solar storms.
astroian<In exile at the Culgoora Solar Observatory in driest Outback Australia
during my short sojourn as an astronomer. Narrabri - you'll never leave

Narrabri is an interesting town to move to for a city boy. One main street, with seven pubs and two drive through bottle shops, and one RSL club. Two video hire libraries, no theatres or other eentertainment. No public transport, just a plane trip to Sydney or Tamworth. I couldn't afford a car.

I worked in Narrabri for nine months. I was diagnosed with Myalgic Encephalomyelitis (ME/CFS) by Professor Denis Wakefield there, and then months later, my back was permanently injured while following instructions from the supervisor at the IPS Culgoora Solar Observatory. Heavy lifting isn't usually in the job description of an astronomer.

I made this observation of a solar storm on the new Spectrograph:

CFS News condensate 8/3/04

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There has been a few news reports about Chronic Fatigue Syndrome recently, most of them full of distracting noise and difficult to find content. So here is my condensation of the stories on the web this week: "Fatigued teens need early treatment": "Gill says her research reinforced that fatigue was really the chronic symptom of CFS. " So the chonic symptom of "Chronic Fatigue Syndrome" is actually fatigue? How insightful!
My severe Chronic Fatigue Syndrome (CFS) symptoms improved dramatically this year and neither I, nor my doctor know why. Now they're getting worse, and again I have hypotheses, but I don't really know. So, as a scientist who may be soon gaining or losing quite a few abilities, I thought I should summarize what I took over the time my Chronic Fatigue Syndrome symptoms, particularly my energy, concentration, memory, arithmetic, and speech improved. (turns out I had Ciguatera poisoning)

Dr Jay Goldstein of the Chronic Fatigue Sydrome Institute has finally released his new book on how to treat the illness.

I was given Ventolin (generic name "salbutamol" or "albuterol") on the 4th January 2004 as first aid for a severe bronchitis attack on a trip to winter Canada, and had wonderful side-effects helping my Chronic Fatigue Syndrome. The better drug, I found, is Symbicort.

After one puff of Ventolin, I immediately heard a loud dizzying, ringing noise, and then my mind cleared.

This is wholly remarkable to someone who has suffered clouding of the brain by severe CFS or Fibromyalgia. To someone like me, who has suffered frequent attacks of mild aphasia and complete confusion for more than a year, this is like going from reading by the light of a randomly flickering LED clock, to switching on the room lights.

Chronic Fatigue Syndrome researcher Dr Jay Goldstein in his book Betrayal By The Brain talks about there being brain systems going wrong that are helped by vaso-constricting drugs, and other brain system problems that are helped by vaso-dilators. A bronchio-dilator like ventolin dilates the bronchial tubes by vasodilator action.

I was prescribed the preventative Symbicort, which is a powder inhaler containing anti-inflammatory budesonide and brochiodilator formoterol. The brain effects were more gentle than the Ventolin, but more substantial and longer lasting. I have massively improved concentration, and my aphasic symptoms are so well controlled that I am able to sit and write for hours or sit and talk for hours. I feel more energetic, and I have a sense of well-being that I suspect comes from the reduction in inflammation.

After two weeks of Symbicort and antibiotics, my bronchitis mostly cleared up. I still had a dry cough, so I visited a doctor, and explained about how much I like the side effects of the Symbicort. He doubled my dose, and wrote a report for my doctor at home.

On the double dose, I had energy and stamina. For the first time in eighteen months, I had been able to go out on walks for pleasure, without debilitating exhaustion. My technical skills came back to me, and I was able to work on a project with my father-in-law to set up his computer to transfer his old video cassette collection to DVD to save space. I worked without tiring for several days before I finally had the familiar CFS "crash" exhaustion and had to simply rest for a few days.

We returned to Sydney via London, and my wife and I walked for six hours a day all over London to see the sights for two days. My legs hurt from simple muscle-tiredness after a good work-out, rather than from inflammation.

Since returning to Sydney, I developed the common side effect of oral thrush from the Symbicort, and my doctor switched me to Ventolin. The Ventolin gave me my voice back and let my body get rid of the thrush. I did have some stamina on the Ventolin alone, and I could still talk, but it simply wasn't as good as the Symbicort.

I started to feel miserable, like you do with flu or CFS, and I wasn't feeling as bright as on the Symbicort. When I started getting the Mild Aphasia symptoms like biting my mouth when I ate, I decided I had to return to the Symbicort. I compromised by halving my dose to one puff twice a day to reduce the risk of hurting my throat, and used an inhaler spacer.

I felt better within twenty minutes. I stopped having to lie down to recover from my one big day out gathering interviews for the Diffusion radio show . I started writing my travel insurance claim, chasing up the money that Centrelink owe me, cleaning the flat, and registering with the
NSW Writer's Centre .

I was diagnosed with Chronic Fatigue Syndrome (CFS) in 1992, and have suffered various insults that have worsened things since then. I have suffered severe symptoms since November 2002, suffering Mild Aphasia and losing seventeen kilograms.

I think the oral thrush that hurts my throat is only caused by the dry powder inhaler, and my google searching has shown that there exist aerosol inhalers that have the same active ingredients budesonide and formoterol, including sinus sprays.

I intend to contact AstraZeneca who make Symbicort and see if they have any information about the drug as a treatment for CFS.

My gastroenterologist early last year told me that my severe CFS symptoms and my mild Aphasia seemed to him to be caused by a micro-organism that exposed my brain to a foreign protein causing inflammation. It makes sense then, that an anti-inflammatory drug should help me.

I'm not cured; I'm still disabled by CFS, but I'm feeling much, much better. I hope that I'm not an isolated case and that these drugs can be used to help relieve some of the symptoms of CFS and Fibromyalgia sufferers around the world.

CFS/ME Society of NSW
A Companion Volume to Dr. Jay A. Goldstein's Betrayal by the Brain: A Guide for Patients and Their Physicians

This is Day Nineteen of winter wonderland, and the air in every house and car is filled with little hairs and fluff that start me coughing up a lung, and the occasional stomach lining. There is no ventilation in winter in the Northern Hemisphere. With the Super-Senses afforded to me by the curse of hyperacuity of my sense of touch, I can count every dog hair and fabric fragment as it hits my lungs going in, and sometimes out.

Hyperacuity is experiencing the removal of the normal filters that remove noise from the signals your brain porcesses from your raw senses. Its usually caused by psychotropic drugs, hypnotic states, or brain inflammation. I've opened the Doors Of Perception, as Huxley called this, with meditation in the past, but sadly its inflammation thats cursed me at random times in the past 12 months, and the Doors are open so wide that I can't get them shut to get some sleep.

I've visited a Canadian 24-hour clinic, so I've been able to compare standards of medical care with my Australian experience. The 90 minute wait wasn't bad for a Monday lunchtime in winter. My Canadian doctor was only able to handle one symptom for the visit, and his objective was to eliminate life-threatening pneumonia as a diagnosis, as quickly as possible and get me out of there so more desperate souls could receive his aid. I'm embarressing everyone with the secondary stomach problem that was caused by literally gut-wrenching, convulsive coughing on my return to the house in Toronto. My responsibility is to hope quietly that it will heal on its own. I would have been able to get an Australian doctor to at least check out the tender points, and get a baseline on whether I've done myself an injury in an already troubled region.

I have full travel insurance, so I can pay for proper medical care, but that doesn't matter. Emergency rooms at hospitals are for life-threatened people only, anyone else will be resented as betraying their civil duties, and be justly punished by unpleasant day-long waits. I'm not dying yet. This I have had explained to me, and this I understand.

I've also had explained to me that the Docs in the Clinic are understaffed and over-worked, and I've seen this. I'm told that Canadian residents do have access to doctors who could actually treat you like a person instead of a symptom, but that these doctors don't see people unless there's a guaranteed commitment to a long-term relationship. Sort of like an arranged marriage.

I should have stayed in Buffalo, and tried out what the US medical system would make of a guy who isn't dying, but can pay to see a doctor. I was certainly in a culture where I was welcome to express my distress, without people dismissing me as a drama queen. I made a bad decision. In my defence, I had all the signs of recovery until I hit the indoor air pollution. I felt like I was trying to breathe the atmosphere of a different planet and failing miserably. Not on Pluto anymore.

Deep exhaustion and oxygen-deprivation caused brain fog, and my ability to think narrowed sharply. Between gasps and full-body spasms, I was still able to clearly express myself in short, witty sentences, to a group of people who had no idea I'd been feverishly ill for four days already. After attempts to solve my oxygen problem with air cleaning machines, postural changes, and drinks of water, I was no longer able to think of a remedy for myself, and only wished for death to hurry up, already.

So I expressed blunt doubts about my survival, and someone was able to suggest stepping outside into the cold night air to escape the indoor air pollution. I wiped my running nose, coughed up the other lung, and put my jumper, snow-boots, jacket, scarf, gloves and touk (to stop my ears freezing), and ventured outsite. I was feeling very foolish I hadn't thought of this traditional Canadian respiratory infection remedy for myself. I risked being told once again how upside-down and topsy-turvey my Australian expectations are.

There is a ray of light from out of this cloud of misery and snow. I've been exposed to vaso-dilators. Much later in the evening when all the people with cars who could drive me to a Clinic had gone home, secure in the knowledge that I only needed a quick trip out into the cold but clean night air to be able to sleep; I was offered a hit of ventolin for my tortured lungs to help me survive the night. It affected my brain a *very good* way. Back in High School, I remember seeing non-asthmatic kids in high school getting high from ventolin puffs.

This is what happened: I heard a loud dizzying, ringing noise, and then my mind cleared.

This is wholly remarkable to someone who has suffered clouding of the brain by severe CFS or Fibromyalgia. To someone like me, who has suffered frequent attacks of mild aphasia and complete confusion, this is like going from reading by the light of a randomly flickering LED clock, to switching on the room lights. Result!

Two weeks ago I was reading the patient's gloss of Dr Jay Goldstein's "Betrayal By The Brain" about his clinical research into Chronic Fatigue Syndrome and Fibromyalgia. He talks about there being brain systems going wrong that are helped by vaso-constricting drugs, and other brain system problems that are helped by vaso-dilators. A bronchial-dilator like ventolin is a vasodilator. I took my prescription bronchitis inhalor tonight, and I didn't experience the ringing in the ears, or get quite so quick an effect. However, what an effect! Not only does it help control my coughing and wheezing, but I've just written a book review, and a rather sizeable blog entry. I've only been prescribed a two week supply. My memory problems seem to remain unhelped, but my concentration and articulation are improved. Memory may simply take longer treatment.

I'll be reading Goldstein's book to see what else he suggests for people who respond the way I have, and planning to get some vasodilation drugs that work a little more long-term on my return to Sydney.

Bad hair Day

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bad hair Day by Ian Woolf

Tuesday morning I ran out of conditioner, but didn't expect any unusual
consequences. In the evening, I left the train station and felt the CFS
warning signs, the tired burning in my muscles and the confused tightness
in my head, and realized that I should buy dinner on the way home because
I would be too exhausted to cook or make phone calls or do anything else
that evening. I mentally added the sound of a plane spiralling down in a
nosedive after being shot down.

My reverie was interrupted before I reached the stairs to the street, by a
middle-aged asian woman telling me she wanted to cut my hair - NOW. I had
to concentrate very hard to understand her English, as she explained that
she was a year in Australia from Korea, worked in a hairdressing salon
near the station, and wanted to cut my hair at home in her flat because
she needed the practice, and wanted to give me a new style. I was
intrigued, but exhaustion ruled, so I thanked her and told her I wasn't
interested, I was very tired and had to go home. She was very insistent,
and demanded that I at least take her name - "Miss Lin", phone number and
address, and refer my friends and see her for a hair cut. I just couldn't
find it in myself to be angry, although I could see that anger would have
been an appropriate response. Her pen ran out; amused, I lent her mine.
"This is Korean paper", she informed me. She pocketed it after pressing
the paper into my hand, and I was in no state to insist on my pen's

Her chatter didn't stop, I wasn't to be allowed off that easily, her
apartment was just behind the car park near the station, I should at least
let her show me where it was. Common sense told me to just go home as per
my original plan, but I was bemused and intrigued. I have a policy of
indulging my curiosity whenever it seems harmless, and I'd never been
accosted by a black-market hairdresser before. I agreed to be shown her
appartment building and walked with her. She continued chattering about
how expensive her rent was, about her family in Korea, and then went on to
assure me that she wasn't a hooker. I asked her to describe what she
wanted to do to my hair, it sounded convincing, even if I couldn't picture
the result. She went on to tell me about being treated badly by the real
estate agent because she was asian. The walk was not just next to the
station, but three blocks. I yawned a few times on the way and she
apologized, recognizing I was indeed tired, but she explained that this
was the only way for her to get customers, as she couldn't advertise with
the conflict this would produce with her daytime employer.

Finally we reached the apartment building, and I felt woozy, knowing that
if I sat down inside her flat, I'd be too confused to easily find my way
home. I also just didn't feel comfortable with this woman, yet I knew that
if she was young and pretty, my glands would probably lead me into her
flat. I explained that I was unwell, and made my goodbyes, and navigated
my way home, having missed the fast food places.

Letting someone practice their art on my hair probably wasn't a good idea
anyway, but I wish her luck. Would you have gone home with her?

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