A few good people out there doing "useful" research

Dr Patrick McGeer

Ernie Murakami said "Dr Pat McGeer is a class mate from Medical School, a director of Murakami Center for Lyme and is Head of Neurological Research at UBC. He and associates have done research on Alzheimer patients and on post mortem found live spirochetes on biopsy specimens from brain tissue.The Borrelia burgdorferi organism was reproduced in BSK fluid media and found to actively invade rat and human cells.  (Journal of Neuroinflammation, Sept 2008). He is world renown in his research and still continues his work in Neurological diseases. His work supports the theory that Chronic Lyme Disease is an infection and not a syndrome. "

Wiki says 

In August 2012, McGeer and his wife Edith founded Aurin Biotech Inc., following indications that the Aurintricarboxylic acid (ATA) complex inhibit activation of the Complement system. Since activation of the complement system is implicated in a number of diseases (see Complement system#Role in Disease), these indications suggested that ATA could be an effective treatment for these diseases. Aurin ^[2] was founded to explore the efficacy of using ATA and related compounds in the treatment of these diseases. The particular focus is on diseases that are caused or exacerbated by aberrant complement activation. Low molecular weight components of the aurintricarboxylic acid complex have been shown to be non-toxic and orally effective.

Pat McGeer is working with Ernie now or as well but what's this I see?  The Gold Coast Neuroimmune research investigating me/cfs has found calcium 2++ ion transport problems in those with me/cfs and it seems it can be cured by this ATA so they have the treatment already even though it is being used for something else at present?  Nothing would surprise me but the research has to be done first and I know nothing about the Complement system nor how it relates to Ca 2++ enzyme problems until I click on those links.  Not doing that now.   I reinstalled windows 10 as a clean install with this tool from microsoft that is actually working

Ernie Murakami is thought of by me as the cannabis man.   There is a lot more to him than that.   I have no idea if CBD oil has got anything to do with the complement system or calcium transport from an electrical point of view.  They may not be related at all, but Ernie seems to have had to deal with a lot of controversy  because of his interests in medical marijuana and now he is retired and offers his services to patients around the world while investigating cannibidiol or CBD.  He is a rare breed of doctor and he really should be at the top of this page because he is nice to everyone!!! He answers questions on his Facebook page and posts information knowing that it is the patients who are hungry for it even though our Governments are lagging in even making the product legal.  The essential oil cannot yet be patented as it is because it is a herb so they make it illegal unless you buy their version which is usually not a whole product but one that has been scientifically manipulated, divided in half at least.  The THC is usually removed by pharmaceutical companies trying to package it for a start.  Who knows what happens and will happen to it over the years but most people who have had no success with conventional medicine tend to go back to natural medicines particularly food and herbs.  I don't think that will ever change.  They could make a futuristic movie about people breaking out of controlled environment cities to pursue medicines in what had survived in the wild that will counter the sick city syndrome with live food.  Maybe nature always comes back if left to itself.  Is that an opiate meandering thought?  Take no notice of it.

Dr. Ernie Murakami M.D. Clinical Associate Professor Emeritus UBC

About Dr. Murakami

Dr. Ernie Murakami became involved in Lyme Disease while in his practice based in the rural community of Hope, British Columbia. 
Through his practice, he developed two new methods of tick removal, one which was the Blister Method; the injection of a pre-measured mixture of Xylocaine and Adrenaline directly beneath the jaw of the tick. This method is used today, primarily in Medical offices and by Emergency physicians. The second method was the Drinking Straw and Single Knot Method, in which the attached tick is placed inside the straw, with the straw held at a 45 degree angle. A suture string is placed under the straw, directly in contact with the mouth of the wood tick. A single knot is applied. Constant alternating releasing pressure is applied upwards away from the skin and the tick releases itself intact, from the host. This technique was accepted by the Compensation Board and the Justice Institute for the training of ambulance and first-aid personnel and is in full use today. 

These techniques were at the time, being taught by Dr. Murakami to other Physicians at International Conferences. During the times spent at these clinics, he became familiar with the treatment of Lyme, both long term and short term, as well as the split theories surrounding the treatment of Lyme. One fraction believed that only 3 weeks of treatment was adequate at any level, despite the fact that this had been disproven, while the other half believed that long term treatment was required to eradicate the Cystic form of the disease, based on biological fact. 

Dr. Murakami became intrigued with the disease as to the epidemiology with his first case of confirmed Lyme Disease in Agassiz, BC at the Federal Penitentiary. This patient showed the typical bulls-eye rash that developed soon after being infected. A second case intrigued him further when another patient from Hope, BC was confirmed to have a typical rash and a positive Eliza serology. Both these patients responded to three weeks of antibiotic treatment.

Subsequent to these cases, Dr. Murakami began receiving referrals from other physicians due to his keen interest in Lyme and his approach to medicinal treatments, both in the removal of the ticks and his successful treatments of the disease. He soon found himself to be a rare physician; willing to acknowledge, diagnose and treat the symptoms of Lyme disease in British Columbia. This was a stand very few other doctors were willing to make. 

Since that time, Dr. Murakami has offered his personal experiences as a physician treating Lyme patients to others in the medical field by speaking at seminars and conferences. His lectures are met with both interest and disbelief and the center of much controversy. News articles soon began to surface as patient after patient would give testimony to Dr. Murakami's somewhat "miraculous" assistance in treating some long-suffering patients of Lyme's, where a history of mis-diagnosis and denial existed prior. Reports began surfacing about the lack of knowledge that exists among the medical communities, both here in Canada as well as the US. 

Today, Dr. Murakami is retired from his regular practice. His keen interest and his willingness to explore a very controversial topic has surrounded him with much media attention and discord among the medical community. He remains true to his Hippocratic Oath however, and offers this site as a base of information to both patients, possible sufferers and doctors alike.

Contacting Dr. Murakami

Dr. Murakami can be spoken to regarding possible Lyme infection by following this procedure only.

Download and print out the Health Questionnaire.
Complete it as best you can
Fax the completed questionnaire to the toll-free number at               1-866-259-2320     
He will then go through the questionnaire and contact you to discuss with you over the phone. All inquiries are handled on a priority sequence basis.
Dr. Murakami does not charge for his opinions. You may, however, make a donation towards the Society.

Thank you for your cooperation in making this procedure as seamless and responsive as possible. We are working diligently to try to streamline his work load so he can be of service to more patients.

Reproduced from Dr. E. Murakami Centre for Lyme
Research, Education & Assistance Society

Getting back to the National Centre for Neuroimmunology and Emerging Diseases (NCNED), Gold Coast campus of Griffith University, they have just this week released a summary of their published research and they seem to be going ahead in leaps and bounds.  I have some recollection that they are tied with Simaron Research and not everyone trusts that latter's motives these days.  Actually I am not sure who they are tied up with but they are receiving Australian backing too. 

October 18, 2016

NCNED is pleased to release the following update of world first discoveries this year in CFS/ME:

• NCNED discovered significant associations of transient receptor potential (TRP) ion channel families from CFS/ME patients.
• NCNED discovered significant reductions in TRPM3 receptors on the cell surface of natural killer (NK) cells and B cells from CFS/ME patients.
• NCNED discovered significant reductions in intracellular calcium as well as stored calcium in NK cells from CFS/ME patients. 
• NCNED discovered significant changes in intracellular calcium-regulated genes from NK cells as well as cell signalling changes that are important for NK cell function and cytokine production in CFS/ME patients.
• NCNED aimed to determine if all these changes in NK cells were due to dysfunction of the TRPM3 receptors located on the cell surface of these cells. 
• NCNED now reports that the significant reduction in NK activity as well as changes in intracellular signalling is associated with low intracellular calcium ions in NK cells through the impairment of TRPM3 ion channels. 
• NCNED highlights these significant findings as the inability to allow sufficient calcium ions to move inside the cell with dysfunctional TRPM3 receptors.
• Importantly the significant dysregulation of TRPM3 receptors NCNED has identified is not confined to NK cells. TRPM3 receptors are located on nearly all cells in the body.  The dysfunction of TRPM3 NCNED has identified suggests this receptor is involved in CFS/ME pathology. 

 We thank every participant, donors, the Stafford Fox Medical Research Foundation, Mr Douglas Stutt, the Alison Hunter Memorial Foundation, the Queensland Government, the Mason Foundation and Change for ME.Without your support these pivotal studies would not have been possible. 

We are continuing to explore every possible pathway for successful therapeutic interventions.  As our research continues we would also like to announce our latest published paper below. 

• Nguyen T, Johnston S, Clarke L, Smith P, Staines D, Marshall-Gradisnik S: Calcium mobilisation in natural killer cells from Chronic fatigue syndrome/Myalgic encephalomyelitis patients is associated with transient receptor potential melastatin 3 ion channels. Clin Exp Immunol 2016.

I've got more to include so check back here. 

Kelly has my genome sequence

Kelly Gaunt, along with her research partner Kristina Gemayel are the real people behind what has come to be called the Nancy Klimas ME/CFS Gene Study which is a huge exercise in data collection enabling people to contribute their own genetic information on a voluntary basis. Genomics is a popular place to be in medicine so that getting people on board if any interesting patterns emerge, should not be problem for further detailed research.  With metabolomics, genomics and microbiomics at the forefront of modern-day research, at least these kinds of studies are attracting attention.  We need attention!!  Crowd-sourcing for genetic data is a brand new concept too and there were only a few little teething problems with this "RedCap" Platform that the girls set up so they deserve congratulations I do not know how much the girls will be involved with data analysis if at all but like the data collection much will be automated. Let's hear from Kelly.

Kelly describes her role in the project as follows: 

What is your background? 

I am currently a third year medical student at Nova Southeastern University that was awarded a research fellowship. Prior to medical school, I worked at the Institute for Neuro Immune Medicine as a Research Associate, where I primarily worked on the CDC Multi-Site Clinical Assessment for Chronic Fatigue Syndrome Study. For undergraduate studies, I attended the University of Florida and graduated cum laude with a Bachelors of Fine Arts.

How did you get interested in this project?  

Even though I no longer worked at the INIM while in medical school, I still maintained contact with Dr. Klimas and her incredible staff. Last year when she and I were talking about possible summer projects, this project came about. From the beginning it seemed like such an exciting project. The idea of creating the first ever unique ME/CFS genetic database that is linked to online symptom questionnaires, will open up countless doors for future research discovery revolving around ME/CFS. Therefore, throughout the summer and over the course of the school year, myself and my research partner Kristina Gemayel, created the study IRB and generated the online RedCap platform where participants are able to upload their genetic information. Then, with the incredible support and man power from Nova Southeastern University Institute for Neuro Immune Medicine the project was able to launch.

What will you be doing for the next year with this project?

As a Research Fellow, I am able to fully dedicate this year to further development of this study. Our goal is to have over 10,000 participants, so one of my main priorities is global recruitment through the use of social media. Our thoughts are since ME/CFS affects people worldwide, we want to reach out and recruit the world! I am reaching out to any website or support group that is willing to listen. The beauty of this project is that every step of this project can be performed by the participant, on their computer in the comfort of their home and geographic location or physical ability is not a limitation.In addition to recruitment, I will be conducting preliminary pilot studies with the data we collect along the way to see if we are able to establish any early noteworthy trends.

How could this project help improve our understanding of ME/CFS? 

The intention of this database is to allow investigators the possibility of nearly limitless research opportunities, such as identifying biomarkers used for establishing diagnoses or correlations between symptom clusters and specific genetic SNPs. Due to the constellation of symptoms that exists among the ME/CFS community, establishing a more definitive diagnosis tool for physicians, will help alleviate the stress and time currently involved. As well as, hopefully lead to sub-grouping symptom categories for effective treatments. Read More

Kelly told #MEAction that they intended to subgroup the patient population by symptom commonalities and investigate any correlating gene mutations. They also hope to discover biomarkers to help assist in diagnosing ME.

My data was provided to them in the form of a zip file that 23andme provided.  23andme charged me for the service and I gave a copy of the results to Kelly and Kristina under the oversight of Nancy Klimas.  The initial contact for me was with a Facebook group that was formed well before data collection began.  The group itself is virtually inactive now because most people have uploaded their files and filled in their online questionnaire after an initial screening to identify suitable patients.

I have not yet received any further requests for information about my illness nor have I received any updates on the progress of the study as a participant.  I did not expect to be kept informed except by way of more general updates from the ME/CFS community itself (the grapevine) and the subsequent publishing of research papers when the study completes.  However, this study is still recruiting for participants until they find 10,000 volunteers so it may be a long wait for results.  They are also now looking for healthy (non ME/CFS) controls and my sister comes to mind.  Hint, hint.  Let me recruit you to 23andme if you do Zena under their referral plan.

Kristine Gemayel, like Kelly was awarded the position at the Institute for Neuro-Immune Medicine at Nova Southeastern University as a winner of the Blue Ribbon Foundations' student fellowship awards which places them in leading ME/CFS research facilities as assistants.  You may remember the Blue Ribbon Foundation as the not-for-profit group that funded the documentary "Forgotten Plague"

When Cort Johnson (of Health Rising) was discussing this study he made a comment about his results with reference to neanderthal genetic material.  It was the first thing that hit me in the face too when I got my 23andme results.  The report you receive includes the percentile rank of neanderthal DNA that you have compared to all other 23andme users.  His was 99 and mine was 85 because apparently 2.9% of my DNA being Neanderthal is a pretty high amount. Comments from others with high percentages of Neanderthal DNA trivially appeared to suggest that there was a high prevalence in the ME/CFS population and so my mind raced ahead.  And if being able to go into a state of dauer is a protection mechanism then perhaps we are calling on ancient genes to do so especially if you like to see ME/CFS as providing some sort of evolutionary advantage for the future as some of us would like to think. The mutations that enabled the generations to survive what comes....that sort of thing.  Probably wishful thinking. Survival isn't everything though and Neanderthal DNA is really only a "smidgen" of our total DNA variants according to 23andme information. 

If you would like to be involved in the MECFS gene study then please email here.  Just be warned that the girls may have already finished their part in the project.

There are many more people involved in other aspects of it.  Nancy Klimas is front and central and one to the right.  It is a big team.

Renovations that I am already appreciating

I am finally safe in the shower.  The other tiles were quite scary for me so I CAN put up with the grey quite easily.  Wednesday stuff.

Don't use the front door, lock it.

next door got a lump of concrete in the ground for her rail

They are extending the front as well as the side part where the rail will go

I don't need that, my knees work again remember, after 2 years without. It's my elbows this year and they are so bad.

Do not use till Friday

 Thursday stuff

Milo has not stopped being on red alert since then.  Wondering if I should drug her tomorrow., she is so jumpy now.

The guy that drove his car on Flora's side

The guy that told Flora to mind her own business

Sexy men can sit cross-legged - to my liking anyway, 3 of them

They made themselves at home

Use the front door but not the back door OK? See my new step which is not wide enough to set the walker on?

Flora's cemented in rail at her front door.  She has not stopped complaining.

I had to move my car, at first he parked on Flora's side again.

Friday stuff

wet concrete

Monday Turf

Before the soil is built up to concrete level

It is more uneven to walk on  under that nice-looking surface than before.
I should fill a few depressions before it takes root.

The big depression got filled up, no more bird bath

The water meter access pit is now level with the turf bit surrounding it

How is that soil down the side NOT going to get washed away in what could be a garden?
And how is Milo going to keep her paws clean?

Quite a few depressions still under that lot too that I should attend to but can't.
If that is mould on the concrete, shouldn't I be removing that too?

I guess the asbestos fence will be the next major intrusion

The outdoor rails didn't get fitted until a couple of weeks later so I hope you realise that these photos were added post post-date.

Do you still love me?

He is busy he says.

Yes mum lol

u sure? ISn't not wanting to chat, a sign that u don't really care?

I miss you so much and the way things used to be between us was sorta better than this. Cohen does not know me. I don't think you realise how much all this withdrawal into your own happy world is actually hurting me. OK, I've said it. Let me back in to your life pretty please. Where do you work?

Drama for the sake of it

Last weekend - he went fishing with C locally despite the "i hate you" the day before.

I was staggering going up the bank, he offered help

Remember that tree in the background was wiped out?

Today, before I got to lie down Mr plod came to the door giving me the third degree about the workmen. I had seen them park up on the grass on Flora's side nosed in to the yard a touch I wondered but my view was obstructed as usual and it may have been Mr plod's place. All I ever really know is that the dog's barking is driving me nuts whichever house it is but when no-one came to my door I went down the back of the house to lie down again and then I heard Flora calling.

Back to the door again, no shoes, no teeth again.  Flora asked me if I was expecting someone to do the carpet because they had parked on her side and she moved them on to my place. They were already parked when I got to the door but I did not see or hear anything of the move itself.  I could not really care about where they parked.  I explained to Flora who it was and we finally worked out that she probably heard the word carpenter rather than carpet.  I just knew that I had to get some sleep.  [I am so much better when I get plenty.  I am obligated to look after my body more selfishly than most.] The workmen came to the door and Flora returned to her side.  ...oh dear now I remember, they only came to the door when a second vehicle turned up so the young one must have been the culprit driver and remained in the purple van waiting for his superior. I did not tell Mr. Plod that because I just remembered then. I told him who they claimed to be and who hired them (Housing). Apparently there were deep tyre marks and I suggested that he may have been poopy at Flora asking him to move because Mr Plod thinks it is a spin the tyre mark. I think he wanted me to go outside and look but I finished with "I'll check it out later".  I went to bed finally. My body was getting desperate and at some time between then and now I remembered that Flora often leaves the hose going too long and the ground may well be damp even there but I have not spoken to anyone about that because it is well and truly night time now that I have woken up. I did go out and look at the car tracks in the grass with a torch and they were in front of Flora's just by his grass but not on it like Mr Plod had implied by saying "out the front of my place".

It does not take much to cause a bit of drama around here and all I ever want to do is keep out of it. It's pathetic what people worry about, it is hardly anything of a mark and the Summer growth will conceal it in no time.  But drama will be on again tomorrow because Mr plod now knows that they will be back at 7.30 am to remove shower tiles. Just what I need.  I wonder if he will use it as an excuse to come inside here.  He was in full Police uniform...hey come on Andrew, hermits don't like attention being drawn their way.

Holiday visitors on the last day of September

Some say the sun makes them relapse.  That's cruel.

Back on the Deralin after this short visit to watch life

Walking to a sitting spot and back to the car caused prolonged relapse which continues

I turned to Marla

Difficult day it was.

I don't feel like I am getting enough oxygen often but if it keeps getting worse I will be in a right pickle!  I am too breathless, dizzy and slow to be able to do anything unless I went at one step every five minutes so every single task I perform is taking longer and longer and longer.  Today's example was a doozy.  I've been putting off going to Coles to get meat and stuff but especially coffee.  I had borrowed 3 days worth of coffee from Flora again and I ran out of that too.  If S was still here I could have sent him but he went home yesterday after taking Connor fishing and I was asleep when he got back from that.  Apparently I slept through the AFL grand final but Collingwood wasn't in it so I did not care.  Scott and I watched a movie together earlier in the day and it was a last minute phone call that got the surprise response of "yes" after the day before's "I hate you".  I could not have coped with Connor and would have had to go to bed anyway so it worked out OK for all in the end.

His Mum and Connor are living at the other grandmother's house in town here these days - she was feeling isolated and before that she was not coping with Connor herself so handed him back to Y for a few weeks.  He gets tossed around now and he is a bit miserable S says; no friends at school.  S would have passed the time here with flying colours had he not said one illogical thing about the dog's collar with the kercheif neck.  He wanted me to take it off Milo immediately because it was making her stick her boobs out and rub them all over him.  It wasn't logical and later I found that he had taken the collar off since I had refused.  He's just got into Shangri La Meditation and he meant to bring me a little shrine and meditation on CD but he forgot to.  He goes to group meditations.  He did remember to bring the mulberry jam he made himself so he's one up on you and me Zena although I for one have made jam at some stage...just not mulberry.  A good job too it was, a nice set. Not too sweet.

Sitting under and arch of greenery getting bitten by mosquitoes

Lots of big birds in here - mainly Noisy Friar birds and Rainbow Lorikeets today.

Getting back to today, I woke up with one thing on my mind, getting food especially beef mince and coffee.  I started getting ready to go up to the shops but I could hardly walk today so I phoned an able-bodied friend first but she was not answering so I phoned Marla.  I have run errands for her plenty of times since her leg/foot/hip stopped working properly and she after years now is out and about with her wheelie walker because she has the energy to pack it in the car and get it out and walk slowly though.  Painfully slow, like me today.  I was in the process of heading to the car with my walker for the first time in public but I did not have the energy and I felt down right dangerous being on my feet because I did not have enough oxygen to make things work.  One step, one breath, one step, one breath kind of thing and I had to go so slowly in order not to make myself feel worse, it was going to take me all day to even get ready to go so I gave up and made the phonecall to a disabled lady to please come and help.  Up until now she has been expecting me to come to her because it is all too hard to deal with the walker even for her unless she has some motivation.  She makes noises about coming over here but she does not come and then gets up me for not remembering her stuck at home.  That's a joke, what does she think my life is all about?  I am way sicker than she is and she is supposed to get the exercise with her walker.  After all the rigmarole today she ended up saying it was good to get the exercise but she would have sat at home instead so you could say I did her a favour but the way it worked out was fraught with problems and delays so that I did not actually get to eat some protein until 3 oclock when finally I got my groceries delivered by Marla in my driveway for the second time.

It looks so bare out the front of Flora's now.  She managed to get some topsoil which makes mud for Milo.

 Fun hey?

Because of her gammy foot, I could not expect her to get out of the car so I took the list and money to her after staggering my way along with Milo on a lead.  That was all so hard that while she was gone I set a chair up at the front letterbox and the hose became an extra tether for the dog and I sat there waiting for her to come back when I thought the time was right but that's right, that didn't happen until after the first phonecall I got from her at Pelican Waters.  Had the credit card fallen out in the driveway because she didn't have it. She put it in her zip section but it wasn't there.  Out I went again to check the drive.  I could barely walk remember?  No it wasn't there.  I had a premonition of this before it actually happened, her losing my card I mean, while I was in front of the computer it just popped into my head so that when I heard her voice on the phone I knew.  It was an hour later by the time she actually had found the card down the side of the car and went into the supermarket.  I was feeling bad because she had had to hobble on her walker back in and out of the shopping centre in a panic about the card. 

Anyway back to sitting out the front waiting for her to come back with my food I was so desperate for.  It was after lunch time by now and I have been able to eat my safe foods ever since the day before my x-ray (which was all clear and so too was the poo sample PCR etc) and everything switched from autonomic stomach problems to autonomic heart-rate and breathing problems.  I've still been getting bowel cramps though and now after all these years I might have to suspect what I thought were safe bowel milky smoothies and whey protein.  I hope not but when a milky coffee makes me feel erky then something is wrong.  Naturally I am using lactose-free milk.  So I quit the liquid nutrition and wanted to get back to my beef mince and egg yolk and went without for the last few days already.  I did alright on that fried rice again when S was here on Friday night so carbs are being friendly to my gut but you know they are not good for the blood glucose levels.  Always having to juggle between 2 evils is not fun at all.

Marla got back with the groceries which I had to get out of the boot etc while she sat in her car but they were not what I had on the list in a couple of cases and since one was a $14 tin of coffee I can't stand, I begged her to go back to the shop while she sat in her car and Milo and I sat on the chair at the letterbox.  She had also bought regular milk and a big 2 litre at that.  She chats for ages too!  She did agree to go back though but by that time i was out of coffee so I did not sip and wait like I would normally have done.  I had the beef mince by then so I got the rissole mostly cooked but had to turn it off in case she turned up and I got stuck outside with her for another half an hour when she came back perhaps with the rissole burning inside.  It takes her 20 minutes to get from my pace and into the shopping centre because everything takes so long when you have a disability.  It slows both of us down so much that together we are a disaster and that is why I raved on Facebook about the wrongness of the disabled helping the disabled.  An able bodied friend would have saved me so much energy in even just getting set up out the front to communicate without having to stand let alone having to carry the groceries.  They could have delivered right to the door!!!  But where are the able-bodied friends?

Finally after I ate, I could have the sleep I so desperately needed.