The Good Stuff about 2010

• I quit being a registered teacher which means I've learned my limits
• It was the last year I tied myself to people I do not really need in my life
• Both of my grandsons have fairly stable family lives now
• Number one son achieved a lot - univeristy studies, quitting smoking and he even had a job for a month
• Number two son moved to Gympie (so I cannot baby sit :)) and the family is back together again and grown in numbers with three animals
• I found an online support group with people who really understand me and I them
• CFS/ME research was brought further into the limelight by the public threat of XMRV contaminated blood supplies around the world
• A visit from Mum and sis and some lovely outings
• There's hardly any fish left to look after
• I'm supposed to be grateful for getting free private dental
• I made a hanging basket of double portulaca which is really pretty (if there is any sun)
• I had some nice day trips around the Coast
• I haven't given up on dreaming about travelling around a bit
• I did not have to go into an operating theatre
• I didn't catch a bad Winter flu
• I got some nice photos and videos
• I'm still alive

But the worst thing that happened to directly effect me was half of Pelican Waters Shops closing down (especially Sam's Warehouse).  I could get everything I needed up there which conserved a lot of spoons (code word for energy in the CFS Community). There were so many global disasters in 2010 that the loss of my favorite shop does not count.  The BP Oil Disaster in the Gulf of Mexico was more than a spill for instance.  Happy New Year Southern States.

Doxycyline for Chest

Dr Fleur Thomas sent me for a chest x-ray and has ordered tests for pertussis serology, mycoplasma, legionella, FBE, ESR, E/LFTs, TSH, but I have not had blood taken because the late appointment meant I ran out of time because after walking in both directions both the local QML and X-ray were closed for the Season so I only got the x-ray done.  It is a bit of a shame because I have some antibiotics I need for a chest infection she heard but cannot take them until the blood test is done.  Anyway, I had had enough and was not going to race to get there.  Maybe 6am tomorrow which means I can get in the antiobiotics after breakfast which themselves will bring their own problems.

I feel shocking, every single bit of me hurts and I am coughing more again but I am not on my last legs yet.  Would love something that would take away the pains though including the glands.  I am sitting here in the humidity with a scarf around my neck.

I told Fleur I had already mentioned a cough to Jo last time I was there. No comment.  Fleur automatically took my blood pressure too - but made no comment.  And she does believe in CFS but it is not a special interest.  I would not say we clicked - don't think that has ever happened with me for a doctor except the old guy who retired was my favorite because he was good for a joint effort at solving a problem.  I'll never forget that woman who told me not to come back when she did not believe I was having withdrawals from anti-depressants. Doctors hate me except the ones who are up for a challenge and even they give up after a while when the rewards aren't forthcoming. I guess not many have been able to put another mark on their chalkboard and say "case solved" when it comes to me.  And I'd like to see an episode on "House" (That's a TV show Mum) with one of those dying people with CFS/ME featured.

The Results of the National Bowel Screen and Jan

"The result of your faecal blood test was NEGATIVE". Yippee, that means no more lasering up of those gastric angioectasia.

Nevertheless, I am so ill with something and it is connected to this cough I have had for a month and a half no doubt.  I now wonder if it is a flare-up of the Micoplasma Pneumoniae I had once or the Glandular Fever.  I am not getting better with my own immune system so I am going to a different doctor today. I ache so badly.  I just know that if antibiotics are prescribed, I am going to end up feeling much worse (profuse watery diarrhea) before I feel better assuming I am not totally allergic to them - tetracycline.  This all started after Jan was diagnosed with whooping cough.

ADDENDUM:  Now she tells me she doesn't think it was whooping cough - her swab came back negative.

Facebook Correspondence

Select: All, Read, None

Show:AllUnread

solution

J 28 December at 20:55

If you are so obsessive-compulsive that you cannot eat my cooking then you can come here once a week and cook my food for both of us. Win-win. I think.

S 29 December at 09:08 Report

sorry mum, You have to respect my lifestyle. You would clean the house up for Nanna and Debbie, And no I can't eat in that enviroment
We will see what happens I have connor comeing for a week before he goes back to School.

J 29 December at 09:12

I did have the house cleaned up by Xmas Dinner and I did warn you not to come early and it was no worse than anyone else's house who had someone busy cooking in the kitchen. You over-reacted big time. I have photos of the mess and it is no worse than the mess you make when cooking. So when we have a meal together, you can cook and I will take the photos!

Christmas Dinner 2010 with K

That was a really exhausting thing to do, emotionally as well.  I'd say Christmas with S last year was a bit more Christmassy than this conversation.  She never stopped talking but we had a lovely meal including the roast fennel and roasted macadamia nuts on the roast pumpkin and Rosemary roasted perfectly golden oven-baked potatoes with steam vegetables and scalloped cabage all served with nice thin slices of Turkey smothered in home-made cranberry sauce.  Hard work, had to take several breaks but I got there no thanks to Miss "Wait on me" (who said she actually could carve meat but didn't). 

But the her main gift to me was a warning - to be ready for the ascension of the Light Workers on 11/11/11  (I wonder what she is going to say on 12/11/11 when she is still here)

MERRY CHRISTMAS - IT IS FINISHED FOR ANOTHER YEAR.

Merry Christmas 2010 - It's a cosmic joke

I have been battling the pain and pacing over the last couple of days to get organized for Christmas Lunch with Scott.  Just do a bit at a time has been my motto.  On Thursday I made the cranberry sauce.  Yesterday I made the trifle minus the jelly topping to be done at the last minute.  Why trifle?...... because that's what Scott wanted when I offered him a choice.  Last night I parboiled the fennel and grape tomatoes ready for roasting today.  I also made scalloped cabbage which I baked with its bacon sauce this morning but I got really tired last night and as soon as I could I went to bed leaving the dishes behind.  The effort was considerable and in fact I wrote a song to be sung to the tune "I wish you a merry christmas" which goes like this:

I wish you a Merry Christmas
With a Migraine over one eye
and a body that tries to tell me
"Won't you go back to bed?"

I wish you a Merry Christmas
With an ear-ache on one side
and a doctor that tries to tell me
"It is all in your head!".

Good tidings I bring
To those muscles aching,
I wish you a Merry Christmas
Hoping next year you're not dead.

Here's the dud video with barely any sound



I woke up early with the pressure of the Roast Dinner not allowing me to go back to sleep. Brian from next door presented me with a bottle of Chardonay for Christmas and I assured him I would not be alone on this special day.  I peeled and parboiled the potatoes and baked the scalloped cabbage and once again headed back to bed for a rest. I could not really sleep but I lay there for an hour thinking how quiet it was and how tired I was, but I decided to stick on the TENS machine to see if it would get rid of some of the shoulder pain.  So when my number one son arrived at the door at a quarter to nine, I was naked and draping a dress in front of me to answer the door with wires hanging down and a machine in my hand.  He was not amused.

He had a bag of soft drink and chips and a present or two.  I went back to the bedroom to robe and he went into his old bedroom asking for wrapping paper for Connor's present.  When I was back in the kitchen surrounded by cooking pots and pans and par-baked goodies and while I was removing the Turkey Hindquarter from it's bag my boy announced how disgusting it all was and said "I cannot eat here, just give me my presents and I am going back home, better luck next year".

Well he is gone with his pillow and parcel from Auntie Debbie and he left a present for me but I am not in the mood to open it.  I shed a few tears but they are pretty dried up these days.  I put the oil and rosemary on the Turkey and shoved it in the oven and here I sit waiting to snap out of it and get back into it.  I'm still having my Christmas Dinner but this year I will be alone after all....which is what I wanted in the first place minus the mess.  Had it have been planned that way, Christmas alone, I would have probably bought a frozen McCains Turkey Dinner and had the energy to go and visit Jan and crew.  Right now, I just feel depleted.

Here is my disgusting mess that s could not deal with.

Pre-Christmas with Connor

'Security is mostly superstition. It does not exist in nature, nor do the children of men as a whole experience it. Avoiding danger is no safer in the long run than outright exposure. Life is either a daring adventure, or nothing. To keep our faces toward change and behave like free spirits in the presence of fate is strength undefeatable.’ Helen Keller

Fourth Move for Son since Dec 2nd

On Wednesday he moved out of the 2nd place and into the 3rd place.  And now I know why he did not have Connor on the weekend, he was moving again into the fourth place.  Kuluin, Maroochydore.  With Jeff or Geoff and a Chris and his girlfriend and a John moving in soon.  A pool and the Internet. And today he collected his rego renewal notice from the collection of mail here so he is "in the shit".

And St is pissed off with Roger because he is not coming for X-mas to see Cohen and is going to Bev's family in Brisbane again as per last year.  She did not go to her Mum's especially for him.  Last year she did go to HB and met Roger in a carpark somewhere to give Cohen his present.  But she does not really want S in case he spoils X-mas there at their place otherwise I would have had somewhere to go (not that I care).  So that is why it will be just me and S X-mas Day.

He moved again on Wednesday (his payday) and Lyrica sucks

3rd share house since he left my place - got asked to leave this time and he moved into somewhere back up Maroochydore way after calling in here to pick up his mail and a few things.  Said he had to get out of here and left without telling me his address.

Said he was pretty keen to have the Roast Turkey hindquarter here on Xmas Day but just the two of us.  No visitors thanks.

I spent from Monday to Friday trying to get used to Lyrica (pregalbin) - an anticonvulsant which supposedly works on the brain for neuropathic pain.  I was either high or woozy and unable to drive so have been confined to home.  It may have helped with relaxing the knotted neck/shoulder muscles that cause my migraines but it was not worth the extra unsteadiness, nightmares, nausea, constipation and dizziness so I quit.  It has not been a very nice week.

B's Lungs  Pneumothorax

Friday 10th Dec - to Gympie Hospital to have 3 pieces of steel removed from his eye - it happened to Roger all the time I remember.

Sunday 12th Dec - 6.30am.  He bends down to sit on the toilet and he felt that pop and squelch that meant a hole in his lung.

8am Ambulance to Gympie hospital

Ultrasound revealed nothing and he was going to be sent home

Midday - xray revealed a small hole in the upper section of the right lung this time and a partial collapse from there upwards.  Very large and hurtful needle sucks out 150ml of air between his lung and ribcage.  He was put on oxygen and asked to stay in hospital for observation pending further xrays Monday.

Monday 13th No change in the condition of the lung - had to stay in hospital for another 24 hours till next xray

Tuesday 14th No change in the condition of the lung but he was allowed to come home anyway if he promised not to smoke and rest.

Thursday 15th xray revealed he was mended so he went straight to R's to catch up on work with doctor's permission conditional on avoiding heavy work.

Connor says
"Apparently Connor thinks the lingo is all the same for dogs and humans etc. He told his mate yesterday that i was sexed not desexed and thats why im having a baby...LMFAO!!!!Bahahaaaaaaa. So gorgeous the things he comes out with sometimes. Will have to remind him of that one at the 21st i think ;)"

Copied from Ange's Facebook

Roxy was S's girlfriend and she wrote to me on Facebook:

Roxy 25 August 2010 at 23:10 Report

Yeah we are all good thanks. I have two boys now so they keep me very busy. I have forwarded below what S wrote. It hasn't upset me it just made no sense and it sounded like he was really depressed and it worried me. I haven't talked to him in ages and he just sent me that out of the blue and then went off facebook. Good to hear he is studying i really hope he is ok. Are you still here on the coast?

Roxy,
I can’t handle this anymore, Sure you are worried though if you were the love of my life I am sure you and I would appreciate the fact we could NEVER let this happen. I find it horrific
I really want a good life Roxanne I have been through hell and I know you want that for me!
I had to send this, they give me hell over you all the time
Please don’t reply even if to say what or whatever, I really don’t need it like I don’t think I really needed to send this.

Bye Roxy. 

 

Actually quite a few have commented to Brett asking what is wrong with Scott because of his strange posts on Facebook that no-one can understand.

 

Hospital Days for Number Two

Friday was not a good day for B.  The car broke down and he got three pieces of steel in his eye which had to get cut out at hospital.

This morning he went to hospital via ambulance because he suspected another collapsed lung.  I found a message from S on Facebook at 9.30am but she was not there when I phoned the house and I have no idea of their mobile phone numbers after all the changes.  I left a message on Roger's mobile phone and he phoned back later and said that B was OK, but there is a hole in his up to now intact lung at the top and he is on oxygen but he looks fine Roger said.  He said something about polyps causing the hole but B knew from the familiar squelching that he can make it do in various positions there was something wrong.  So far his lung has remained inflated beneath the hole and he will be kept in hospital overnight.  R, S and the machine as R calls Cohen were heading back to the house to get some clothes for B.  They will go back later.  It seems he had to wait in pain for 4 hours before the xray and in pain and getting worse and then after that they sucked out 130ml of air from his chest cavity with a gigantic needle but he has not had that huge tube and hopefully willl avoid it - nevertheless it hurt.

Number one said things were fine (except that he was broke) on a Facebook message but I have not spoken to him.

Me, I'm still feeling achey, shakey, weak and ill and am beginning to wonder if I will get better.  I am getting a lot of pins and needles and strange pains including chest pains and I am tired and not able to look after myself very well.  Basic cooking like an egg or veggie burger which sets my heart racing according to the HR monitor and quick showers is about my limit.  My glands are still sore and I cannot stand the light and noise and feel nauseous periodically and I have that low gut pain I used to associate with Crohn's.  I have to be patient and wait for it to pass....but at least I don't feel bored like I do when I am well enough to want more out of life.  It's raining and raining and raining so I am not missing much.

And just for a reminder of the exitment going on in Australia here're the photos of the week.

And this photo will remind me that the USA is finally catching up to the UK because the Red Cross now will not accept blood from CFS patients just like England.  The ad was posted in the Washington Post.



Mitochondrial Failure is the Central Cause in CFS - a good summary of the cardiac effects and more.

So what am I spending your Xmas money on this year?  More energy! I have ordered some D-Ribose from overseas because the price is ridiculous in AU.  Anyway I have reproduced the article from
http://www.drmyhill.co.uk/wiki/CFS_-_The_Central_Cause:_Mitochondrial_Failure

Introduction

I think this is one of the most important handouts I have ever produced in terms of my understanding of CFS and what to do in order to recover! So please read this very carefully and several times over because for many sufferers it contains the keys to unlock their illness!

A very useful analogy is to think of the body as a car. What supplies the energy and the power to make that car work is the engine. Effectively mitochondria are the engines of our cells - they supply the energy necessary for all cellular processes to take place.

We are made up of lots of different cells - heart, blood, muscle nerve cells etc. All these cells are different because they all have a different job of work to do. To do this job of work requires energy. But the way in which energy is supplied is the same for every cell in the body. Indeed all animals share this same system. The mitochondria in my dog, my cat and my horse are exactly the same as mine. Mitochondria are a common biological unit across the animal kingdom. Energy is supplied to cells by mitochondria which I think of as little engines which power every cell in the body.

Chronic fatigue syndrome is the symptom caused by mitochondrial failure

The job of mitochondria is to supply energy in the form of ATP (adenosine triphosphate). This is the universal currency of energy. It can be used for all sorts of biochemical jobs from muscle contraction to hormone production. When mitochondria fail, this results in poor supply of ATP, so cells go slow because they do not have the energy supply to function at a normal speed. This means that all bodily functions go slow.

Every cell in the body can be affected

The following explains what happens inside each cell:

ATP (3 phosphates) is converted to ADP (2 phosphates) with the release of energy for work. ADP passes into the mitochondria where ATP is remade by oxidative phosphorylation (ie a phosphate group is stuck on). ATP recycles approximately every 10 seconds in a normal person - if this goes slow, then the cell goes slow and so the person goes slow and clinically has poor stamina ie CFS.

Problems arise when the system is stressed. If the CFS sufferer asks for energy faster than he can supply it, (and actually most CFS sufferers are doing this most of the time!) ATP is converted to ADP faster than it can be recycled. This means there is a build up of ADP. Some ADP is inevitably shunted into adenosine monophosphate (AMP -1 phosphate). But this creates a real problem, indeed a metabolic disaster, because AMP, largely speaking, cannot be recycled and is lost in urine.

Indeed this is the biological basis of poor stamina. One can only go at the rate at which mitochondria can produce ATP. If mitochondria go slow, stamina is poor.

If ATP levels drop as a result of leakage of AMP, the body then has to make brand new ATP. ATP can be made very quickly from a sugar D-ribose, but D-ribose is only slowly made from glucose (via the pentose phosphate shunt for those clever biochemists out there!). This takes anything from one to four days. So this is the biological basis for delayed fatigue.

However there is another problem. If the body is very short of ATP, it can make a very small amount of ATP directly from glucose by converting it into lactic acid. This is exactly what many CFS sufferers do and indeed we know that CFS sufferers readily switch into anaerobic metabolism. However this results in two serious problems - lactic acid quickly builds up especially in muscles to cause pain, heaviness, aching and soreness ("lactic acid burn"), secondly no glucose is available in order to make D-ribose! So new ATP cannot be easily made when you are really run down. Recovery takes days!

When mitochondria function well, as the person rests following exertion, lactic acid is quickly converted back to glucose (via-pyruvate) and the lactic burn disappears. But this is an energy requiring process! Glucose to lactic acid produces two molecules of ATP for the body to use, but the reverse process requires six molecules of ATP. If there is no ATP available, and this is of course what happens as mitochondria fail, then the lactic acid may persist for many minutes, or indeed hours causing great pain. (for the biochemists, this reverse process takes place in the liver and is called the Cori cycle).

Treatment package for failing mitochondria

The biological basis of treatment is therefore explained:

* Pace - do not use up energy faster than your mitos can supply it.
* Feed the mitochondria - supply the raw material necessary for the mitochondria to heal themselves and work efficiently. This means feeding the mitos correctly so they can heal and repair.
* Address the underlying causes as to why mitochondria have been damaged. This must also be put in place to prevent ongoing damage to mitos. In order of importance this involves:
* Pacing activities to avoid undue stress to mitos
* Getting excellent sleep so mitos can repair
* Excellent nutrition with respect to:
o taking a good range of micronutrient supplements
o stabilising blood sugar levels
o identifying allergies to foods
* Detoxifying to unload heavy metals, pesticides, drugs, social poisons (alcohol,tobacco etc) and volatile organic compounds, all of which which poison mitos.
* Addressing the common problem of hyperventilation
* Address the secondary damage caused by mitochondrial failure such as immune disturbances resulting in allergies and autoimmunity, poor digestive function, hormone gland failure, slow liver detoxification.

And now for a bit of good news! AMP can be recycled, but slowly. Interestingly, the enzyme which does this (cyclic AMP) is activated by caffeine! So the perfect pick-me-up for CFS sufferers could be a real black organic coffee with a teaspoon of D-ribose!

A Vital Test in Chronic Fatigue Syndrome

The central problem of chronic fatigue syndrome is mitochondrial failure resulting in poor production of ATP. ATP is the currency of energy in the body and if the production of this is impaired then all cellular processes will go slow. It is not good enough to measure absolute levels of ATP in cells since this will simply reflect how well rested the sufferer is. The perfect test is to measure the rate at which ATP is recycled in cells and this test has now been developed by John McLaren Howard. He calls it "ATP profiles". It is a test of mitochondrial function.

Not only does this test measure the rate at which ATP is made, it also looks at where the problem lies. Production of ATP is highly dependent on magnesium status and the first part of the test studies this aspect.

The second aspect of the test measures the efficiency with which ATP is made from ADP. If this is abnormal then this could be as a result of magnesium deficiency, of low levels of Co-enzyme Q10, low levels of vitamin B3 (NAD) or of acetyl L-carnitine.

The third possibility is that the protein which transports ATP and ADP across mitochondrial membrane is impaired and this is also measured.

The joy of the ATP profiles test is that we now have an objective test of chronic fatigue syndrome which clearly shows this illness has a physical basis. This test clearly shows that cognitive behaviour therapy, graded exercise and anti-depressants are irrelevant in addressing the root cause of this illness.

To get the full picture I recommend combining this test with measuring levels of Co-enzyme Q10, SODase, Glutathione Peroxidase, L-carnitine, NAD and cell-free DNA. Cell free DNA is very useful because it reflects severity of the illness. When cells are damaged and die, they release their contents into the blood stream - cell free DNA measures the extent of this damage. The levels which come back are similar to those from patients recovering from major infections, trauma, surgery or chemotherapy - so this test puts CFS firmly in the realms of major organic pathology. SODase is an important antioxidant which mops up the free radicals produced in all the inefficient chemical reactions in the cells. Dr John McLaren-Howard has recently developed a serum L-carnitine test and made it available in September 2009. I have now included it in the Mitochondrial Function Profile.

In fact, all seven tests have now been combined as a "Mitochondrial Function Profile" and can be ordered from my practice. To order the test, please use the online order form at the bottom of the test page (see link below). I also need your completed Medical Questionnaire.

For payment methods, please see [Ordering tests]. You can also post a note requesting the test with a paper copy of the questionnaire and your payment (a cheque for £295, i.e. £225 for the tests and £70 for my letter to your GP, made payable to Sarah Myhill Limited) to my office at Upper Weston, Llangunllo, Knighton, Powys LD7 1SL. On receipt of your questionnaire and payment a test kit will be sent to you. The price for my letter reflects the fact that in that 10 - 14 page letter I interpret 7 separate tests as well as giving advice about all the various health problems reported in your questionnaire.

One other important co-factor in the production of energy in cells is D-ribose. It is used up so quickly by cells that measuring levels is unhelpful, but low levels of ATP imply low levels of D-ribose.

CFS is low cardiac output secondary to mitochondrial malfunction

Two papers have come to my notice recently which make great sense of both my clinical observations and also the idea that CFS is a symptom of mitochondrial failure. The two symptoms I am looking for in CFS to make the diagnosis is firstly very poor stamina and secondly delayed fatigue. I think I can now explain these in terms of what is going on inside cells and the effects on major organs of the body (primarily the heart). More importantly, there are major implications for a test for CFS and of course management and recovery.

If mitochondria (the little engines found inside every cell in the body) do not work properly, then the energy supply to every cell in the body will be impaired. This includes the heart. Many of the symptoms of CFS could be explained by heart failure because the heart muscle cannot work properly. Cardiologists and other doctors are used to dealing with heart failure due to poor blood supply to the heart itself. In CFS the heart failure is caused by poor muscle function and therefore strictly speaking is a cardiomyopathy. This means the function of the heart will be very abnormal, but traditional tests of heart failure, such as ECG, ECHOs, angiograms etc, will be normal.

Thanks to work by Dr Arnold Peckerman www.cfids-cab.org/cfs-inform/Coicfs/peckerman.etal.03.pdf we now know that cardiac output in CFS patients is impaired. Furthermore the level of impairment correlates very closely to the level of disability in patients. Dr Peckerman was asked by the US National Institutes of Health to develop a test for CFS in order to help them to judge the level of disability in patients claiming Social Security benefits. Peckerman is a cardiologist and on the basis that CFS patients suffer low blood pressure, low blood volume and perfusion defects, he surmised CFS patients were in heart failure To test this he came up with Q scores.

"Q" stands for cardiac output in litres per minute and this can be measured using a totally non-invasive method called Impedence Cardiography. This allows one to accurately measure cardiac output by measuring the electrical impedence across the chest wall. The greater the blood flow the less the impedance. This can be adjusted according to chest and body size to produce a reliable measurement (this is done using a standard algorithm). It is important to do this test when supine and again in the upright position. This is because cardiac output in healthy people will vary from 7 litres per min when lying down to 5 litres per min when standing. In healthy people this drop is not enough to affect function. But in CFS sufferers the drop may be from 5 litres lying down to 3.5 litres standing up. At this level the sufferer has a cardiac output which causes borderline organ failure.

This explains why CFS patients feel much better lying down. They have acceptable cardiac output lying down, but standing up they are in borderline heart and organ failure. CFS is therefore the symptom which prevents the patient developing complete heart failure. Actually, everyone feels more rested when they are sitting down with their feet up! The subconscious has worked out that the heart has to work less hard when you are sitting down with your feet up - so we do so because we feel more comfortable!

Low cardiac output explains the symptoms of CFS

The job of the heart is to maintain blood pressure. If the blood pressure falls, organs start to fail. If the heart is working inadequately as a pump then the only way blood pressure can be sustained is by shutting down blood supply to organs. Organs are shut down in terms of priority, i.e. the skin first, then muscles, followed by liver, gut, brain and finally the heart, lung and kidney. As these organ systems shut down, this creates further problems for the body in terms of toxic overload, susceptibility to viruses which damage mitochondria further, thus exacerbating all the problems of the CFS sufferer. This is called POTS postural orthostatic tachycardia syndrome

Dr Paul Cheney has explored this further with his work with cardiac output in CFS - see Dr Cheney on heart function

Chest pain

This is a common symptom in CFS. Chest pain results when energy delivery to the muscles is impaired. There is a switch to anaerobic metabolism, lactic acid is produced and this results in the symptom of angina. Doctors recognise one cause ie poor blood supply, ie the supply of fuel and oxygen is impeded. However this fuel and oxygen has to be converted to ATP by mitochondria, so if this is slow, the same symptom of angina will result.

One molecule of sugar, when burnt aerobically by mitochondria, will produce 36 molecules of ATP. In anaerobic metabolism, only 2 molecules of ATP are produced. This is very inefficient and lactic acid builds up quickly. The problem is that to convert lactic acid back to sugar (pyruvate) 6 molecules of ATP are needed (the Cori cycle). So in CFS the chest pain is longer lasting because this conversion back is so slow. Clinically this does not look like typical angina. Many patients are told they have non-typical chest pain with the implication that nothing is wrong! Actually they have mitochondrial filure in the heart.

Effects on the Skin

If you shut down the blood supply to the skin, this has two main effects. The first is that the skin is responsible for controlling the temperature of the body. This means that CFS patients become intolerant of heat. If the body gets too hot then it cannot lose heat through the skin (because it has no blood supply) and the core temperature increases. The only way the body can compensate for this is by switching off the thyroid gland (which is responsible for the level of metabolic activity in the body and hence heat generation) and so one gets a compensatory underactive thyroid. This alone worsens the problems of fatigue.

The second problem is that if the micro-circulation in the skin is shut down, then the body cannot sweat. This is a major way through which toxins, particularly heavy metals, pesticides and volatile organic compounds are excreted. Therefore the CFS sufferer's body is much better at accumulating toxins, which of course further damage mitochondria.

Symptoms in Muscles

If the blood supply to muscles is impaired, then muscles quickly run out of oxygen when one starts to exercise. With no oxygen in the muscles the cells switch over to anaerobic metabolism, which produces lactic acid and it is this that makes muscles ache so much.

As well as the above problem, muscles in the CFS patient have very poor stamina because the mitochondria which supply them with energy are malfunctioning.

Symptoms in the Liver and Gut

Poor blood supply to the gut results in inefficient digestion, poor production of digestive juices and leaky gut syndrome. Leaky gut syndrome causes many other problems such as allergies, autoimmunity, malabsorption, etc., which further compound the problems of CFS.

If liver circulation is inadequate, this will result in poor detoxification, not just of heavy metals, pesticides and volatile organic compounds, but also toxins produced as a result of fermentation in the gut again further poisoning the mitochondria.

Effects on the Brain

In October 2007 I attended a conference sponsored by the late Dr John Richardson. A Canadian physician Dr Byron Hyde showed us some functional scans of the brains of CFS patients. If I had not known the diagnosis, I would have diagnosed strokes. This is because the blood supply to some area of the brain was so impaired. The default is temporary and with rest, blood supply recovers. However, this explains the multiplicity of brain symptoms suffered from, such as poor short term memory, difficulty multi-tasking, slow mental processing and so on. Furthermore, brain cells are not particularly well stocked with mitochondria and therefore they run out of energy very quickly.

Effects on the Heart

There are two effects on the heart. The first effect of poor micro-circulation to the heart is disturbance of the electrical conductivity which causes dysrhythmias. Many patients with chronic fatigue syndrome complain of palpitations, missed heart beats or whatever. This is particularly the case in patients with poisoning by chemicals since the chemicals are also directly toxic to nerve cells.

The second obvious result is poor exercise tolerance. Heart muscle fatigues in just the same way that other muscles fatigue. Symptomatically this causes chest pain and fatigue. In the longer term it can cause heart valve defects because the muscles which normally hold the mitral valve open also fatigue.

The difference between this type of heart failure and medically recognised congestive cardiac failure is that patients with CFS protect themselves from organ failure because of their fatigue symptoms. Patients with congestive cardiac failure initially do not get fatigue and often present with organ failures such as kidney failure or overt heart failure. At present I do not know why there is this difference.

This approach to treating Heart Disease is exactly the same regardlees of the conventionaol diagnosis.

So patients with angina, high blood pressure, heart failure, cardiomyopathy, some valve defects as well as patients with cardiac dysrhythmias also have mitochondrial problems and will respond in the same way to nutritional therapies and detox therapies.

Effects on Lung and Kidney

The lung and kidney are relatively protected against poor micro-circulation because they have the largest renin angiotensin system, which keeps the blood pressure up in these vital organs. Therefore clinically one does not see patients with kidney failure or pulmonary hypoperfusion in CFS.

Explanation of the Fatigue Problems in CFS Patients

Energy to the body is supplied by mitochondria, which firstly produce NAD (nicotinamide adenosine diphosphate) from Kreb's citric acid cycle and this is used to power oxidative phosphorylation which generates ATP (adenosine triphosphate). These molecules are the "currency" of energy in the body. Almost all energy requiring processes in the body have to be "paid for" with NAD and ATP, but largely ATP. The reserves of ATP in cells are very small. At any one moment in heart muscle cells there is only enough ATP to last about ten contractions. Thus the mitochondria have to be extremely good at re-cycling ATP to keep the cell constantly supplied with energy.

If the cell is not very efficient at re-cycling ATP, then the cell runs out of energy very quickly and this causes the symptoms of weakness and poor stamina. The cell literally has to "hibernate" and wait until more ATP has been manufactured.

In producing energy, ATP (three phosphates) is converted into ADP (two phosphates) and ADP is re-cycled back through mitochondria to produce ATP. However, if the cell is pushed (ie stressed) when there is no ATP about, then it will start to use ADP instead. The body can create energy from ADP to AMP (one phosphate), but the trouble is that AMP cannot be re-cycled. The only way that ADP can be regenerated is by making from fresh ingredients, but this takes days to do. This explains the delayed fatigue seen in chronic fatigue syndrome.

So to summarise, the basic pathology in CFS is slow re-cycling of ATP to ADP and back to ATP again. If patients push themselves and make more energy demands, then ADP is converted to AMP which cannot be recycled and it is this which is responsible for the delayed fatigue. This is because it takes the body several days to make fresh ATP from new ingredients. When patients overdo things and "hit a brick wall" this is because they have no ATP or ADP to function at all.

Implications for Treatment

Many patients I see get well with my standard work up with respect to vitamins and minerals, diet, pacing and sleep. However many need the specific package of supplements, to further support mitochondria which includes D-ribose, CoQ10, acetyl-l-carnitine, NAD, magnesium and B12 injections. All these things must be put in place to repair and prevent ongoing damage to mitochondria so allowing them to recover. For mitochondria to recover they need all the essential vitamins, minerals, essential fatty acids and amino acids to manufacture the cellular machinery to restore normal function. The mitochondrial function tests then allow us to identify lesions which can be corrected by attention to nutritional supplements, improving antioxidant status, detoxing, hyperventilation or whatever. CFS sufferers have limited reserves of physical, mental and emotional energy and this test allows us to direct those energies into the most fruitful line of approach.

Clinically the above issues mean that there are two clear stages of fatigue:

1. Mild chronic fatigue syndrome - in mild fatigue there is mild failure of mitochondria. If mitochondria go slow then cells go slow. If cells go slow then organs go slow. The body will become generally less efficient. So for example somebody mildly affected would not be able to increase their fitness - if they try to exercise they would quickly switch into lactic acid metabolism and would be forced to stop. Indeed we now know that mitochondria are responsible for controlling the normal ageing process. Therefore many of the symptoms and diseases associated with ageing are actually the result of mitochondrial function declining. Indeed many of these ageing diseases have now been attributed to mitochondrial failure such as loss of tissues (loss of muscle bulk), organ failures, neurodegenerative conditions, heart disease and cancer. Many symptoms which are attributed to ageing are due to mitochondria. It is not that we can stop the mitochondria from ageing, but we can certainly slow it all down using good nutrition, good diet, freedom from toxic stress, healthy lifestyles and so on.

2. Severe chronic fatigue syndrome - in severe chronic fatigue all the above factors apply. However, there is an additional problem. The most metabolically demanding organ in the body is the heart and if mitochondria cannot supply the heart with sufficient energy then the heart will go into a low output state. This compounds the problem of all mitochondria. If the heart is in a low output state then blood supply is poor and therefore the fuel and oxygen necessary for the engine to work are also impaired. So this compounds all the above problems and makes them proceed even more quickly and people end up with greater disability.

I suspect it is a combination of the underlying poor mitochondrial function, which then suddenly becomes critical when it comes to cardiac output, which precipitates a much more severe illness in someone who is already compromised.

What About M.E.?

What About Me? Trailer - USA from Double D Productions on Vimeo.

By the way, her website link is HERE and I do not think treating CFS it is as simple as a stone-age diet but 1 second ago

I think the point of the matter is that Dr Sarah Myhill is "sharing" her knowledge enabling patients to help themselves. It is her spirit and character that I admire and her drawing attention to millions of people suffering is a great service to we, the forgotten ones who have had our potential taken away from us and our characters belittled by the medical system which we know is run by greed and profit rather than concern for the people.

There are a collection of us posting videos(or trying)to each other mainly on the vimeo channel named for the double d movie being made which has led to all sorts of new contacts for me and ME on facebook. I have found my true friends.

In fact it turns out that I used to teach one lady's son at Middle Ridge State School. I remembered the surname. He's 39 now. Brendan Mawhood bless his heart.

Top Brains Tackle Chronic Fatigue Syndrome

03:27 AEST Fri Dec 3 2010

Some of the world's leading researchers in neuroscience and immunology have gathered on the Gold Coast for an international science symposium on the debilitating chronic fatigue syndrome (CFS).

It's estimated about a quarter of a million Australians are affected by the illness, which causes dysfunction of the brain and the gastro-intestinal, immune, endocrine and cardiac systems.

The cost to the Australian community is put at close to $380 million a year.

Symposium co-organiser Dr Sonya Marshall-Gradisnik said for the next two days top scientists from around the world will focus on the current state of research into CFS and help set a focus for research in the future.
"The objective is to bring new research ideas and different approaches to explaining and treating this disabling condition," she said.

It's the first conference to pull together scientists involved in CFS research and others who haven't worked closely in the field but whose "incisive minds and research skills" may help in unravelling this perplexing condition.

The symposium at Bond University's Faculty of Health Sciences and Medicine will end on Saturday.

From Brightwater, Kawana; to Warana; to Vulva

I told you he gave notice but it seems he got his bond back and has moved out of the most advertised real estate community on local TV already.  By now he should have met up with the next co-tenant who I hope is more to his liking.  He phoned first but then ended up coming here to use the Internet and phone before he met up with this new person.  He had conveniently forgotten the Street name this time so I do not know where he is.  He is allowed to move in tonight.

I am seeing a pattern to his house moves in connection with his mobile phones.  He got a new number last week and got another sim card today.  He sure knows how to make a lot of trouble for himself.  Having to change his address on everything is bad enough but the phone number too so that his past contacts lose him and if it were me, I guess I would suspect the worst if he happened to owe money.  You and I both know that this is not a calculated evasion of his responsibility and much more likely to be related to his own personal thoughts about karma, numerology or something more psychotic.  I now have no idea how to contact him because he left me before giving me the number saying that he would phone again later.

It sounds like he has not found a job that at least pays a retainer in the time since he left here.

When he phoned from a public phonebox, at first I thought it was Brett with a cold, they sounded alike but the cold part meant - Brett would have been feeling sorry for himself because he usually is bright enough on the phone.  Anyway, it wasn't Brett feeling down, it was Scott and he sounded normal for him, but if I spoke like that it would be down-in-the dumps for me too - which is another story - except to say that I feel somewhat better today but my glands are still sore and you can add another stupid syndrome to my list too. It all started with laching eggs.

vulvodynia - yet another controversial diagnosis

And here's wonderful interactive diagram of the vulval area Have fun and mouse over the bartholan"s gland text and duct and then imagine the trip to hospital when I had to get a Bartholan's abscess removed - I wonder if that means I am minus a duct now?

He Has Given Notice Already!

Yesterday was the only day that I have not seen the son who "moved on".  He was here on Friday before picking up C from school for the weekend (to use the Internet) and he was here when I woke up this afternoon after the longest day sleep I have had for ages - 4.5 hours.  As usual, he woke me up and I am still waking up an hour later.  He has gone again now.  I thought he would have been dropping C back but as it turned out Ange (who is now officially engaged to Pauly) picked C up from Brightwater.  I guess he was using the Internet but maybe there was something else.   He was telling me that he has given notice to move out again in two weeks because he feels Brent is wanting him to take his side in dealings with Brents ex-wife and because he won't take sides he thinks Brent is pointing the finger at him somehow and because S is a real estate agent, he thinks that Brent is pointing the finger at him for that too.  So it was S who said that he didn't think it would work out and Brent who said he had to stay for the 2 weeks he already paid and then me who said that I have already sent the paperwork to Housing to take him off this house.  He is looking at another place on the way home. *Sigh*.

As for me, I am just trying to unwind but he keeps coming back.  The heart-rate monitoring is interesting but I cannot do much without going over threshold and now that I am resuming chores more, that means it is over all the time that I am on my feet and sometimes way, way over like the level of having moderate to heavy exercise in the gym.  But the peculiar thing is that if I am standing working/making coffee in the kitchen it goes way over threshold but if I walk slowly with arms hanging, I can bring it back down.  It seems working with my upper body is a no-no which seems to coincide with this migraine I get when I drive roundabouts or hang up washing.  When I am vulnerable, like now, even typing on the computer with my arms in normal typing position puts a strain on my heart....yet I can sit in the same chair with hands in lap and be totally under threshold.  Maybe there is something going on in my neck/shoulders that is not just a chiropractic matter.  Anyway while standing still starts my legs shaking, I certainly won't be doing much so the kitchen bench and anything at a height where I don't have to bend is already collecting a mess.  But it is saving me!  I hated it when S would put everything away - especially the sugar way up on top of the cupboard.  I did love the benches being clear from an aesthetic point of view but for me it is just not practical.

Blood Test Results

Everything else was OK she said except for an elevated CCrap or whatever it said down below in a previous post so now she has ordered:

dsDNA blood test.

Half an hour to go before he leaves with his car load.  Don't sit on the lounge chair though, because he stuck the laminate under there (while he has the mattress) for some firmness before the cushions and it breaks every time you sit on it.  I'm too tired to deal with it.

Addendum:
CRP = C-Reactive Protein = 7

http://www.drkaslow.com/html/c-reactive_protein.html

dsDNA test is for Lupus. Will get it done Monday.

Son Moves Out and More Blackouts

Just had another 3 hour blackout this time.  So the phones and Internet have been out and it is affecting half the shops in Golden Beach including the new supermarket.  It may go out again so I will make this brief.  He was at the beach last night, fell asleep there and came home when it started to rain at about 4am.  The lights were back on by then but they went off before 8am again.

I am absolutely so sick, shaking, wobbly, heart racing, aching, head inside noises so loud I can't hear Scott when he speaks even though I normally can with out aids, and worried because he keeps packing stuff of mine as soon as lie down.  Just little things to him - like my sheets - the newest ones ofcourse.  I know I cannot possibly keep up with his craftiness and I know my cane table is in the car and if I get it back it will be because I remember to ask once again.  He has taken the mattress off the sofa bed because he cannot take the inner spring bed in his car.

I am supposed to go to the doc later and I bet they are behind because they would have been without power too.  Maybe I can lie in a spare doc room to wait????  I am not getting better anyway...yet.  I had to help Flora with no candles and boiling water on gas bottles for me so generally excess activity and excess heart rate.

Goodbye S

Blackout

It is his last night living here except for one thing,  he is not here and it is 3.30am.  We had a blackout which lasted for hours and I have no idea what happened but it was only very local.  During the time in candlelight I thought it was a good time to chat but he did not get the message across that he did not want to talk because the only verbal clue I had was a conversation beginning with "I know what you're doing" said in a very accusatory manner.  So the next ten minutes was spent with him lecturing me about this deliberate assassination of him and my trying to defend myself.  Finally he said that he was looking forward to just sitting there in the peace and quiet so that I realized that he had totally failed to convey that message at the beginning of the conversation.  As soon as I got the message, we did just sit quietly.  In fact he fell asleep. 

An hour or more later he woke up to candlelight.  I gave him a portable light for his bedroom and I found him sitting and examining his face in the mirror and he said "I have to get out of here.  Look what it is doing to my face/forehead.  I am going for a drive".  I have not seen him since.  He cannot be at his new house because he has not even got the key yet and the new arrangements are that he meets Brent tomorrow afternoon after work.

The lights are back on - I woke up to them.  And I can just hear his car pulling in so all is well - I was just about to phone. Phew!