Thursday, 27 May 2010

Dr Myhill at the International ME Conference

I found Dr Myhill's conference report very helpful in translating science down to my level. I can't agree with her that it is less important to find causes of ME than treatments for it (treatment being her own field) - I am just very glad that there are people focusing on both. We are very very lucky that people like Dr Myhill are working on treatments. However, I have not given up hope of a cure, so I place a lot of importance on research into causes too.

Here's the report:

May 26th 2010 - Invest in ME International - 5th Conference
A summary of the day and implications for treatment

Speakers: Professor Leonard Jason, Professor Norah Chapman, Dr John Chia, Dr Paul Cheney, Dr Jonathan Kerr, Dr Nancy Klimas, Professor Brigitte Huber and Doctor Judy Mikovits
The role of viruses in CFS/ME

The emphasis of this conference was very much on viral causes of chronic fatigue syndrome / ME and the immune responses that go with that. Much discussion went into the classification of types of ME by various sub-groups particularly by Professor Jason and Dr Kerr, but my view is that at present this has little implication for treatment. Norah Chapman concentrated on cocksackie B infections, Dr John Chia on enteroviral infections, Brigitte Huber on retrovirus HERV K-18 (which we all have in our genome) and Judy Mikovits on the new XMRV virus. All these viruses are implicated in cases of CFS/ME but what makes the difference between a short illness and recovery and illness and prolonged CFS is the response of the immune system to those viral insults. Studies show the virus continues to be present albeit at very low levels and because the virus is at such low levels this explains why many tests do not pick it up - it is simply below the level of the radar.

However this low level viral persistence may result in chronic inflammation in susceptible individuals wherever that virus happens to be and this would explain many of the symptoms of CFS/ME. So for example Dr John Chia found that in 165 patients with CFS 82% had high levels of entrovirus in the gastric antrum of the stomach. Norah Chapman found low level infection by defective cocksackie B viruses in non-dividing cells in particular muscle cells (including the heart muscle) and by implication brain cells (because these enteroviruses persist in non-dividing cells). Brigitte Huber showed that HERV K-18 MRNA levels are higher in CFS patients. Judy Mikovits of course has demonstrated the presence of XMRV infection in 67% of patients diagnosed with ME/CFS compared to 3% of normal controls.

What this tells us is that patients with CFS/ME are not good at dealing with viral infections, they do not eradicate them efficiently and this viral DNA gets in the way of cell metabolism causing a low grade chronic inflammation which means cells malfunction.

The most important point about all this wonderful work is that it clearly establishes CFS/ME as a physical disorder with physical lesions and physical treatments.
The clinical picture
John Chia made the point that enteroviruses are the commonest cause of 'flu-like symptoms. Enteroviruses may be picked up as a result of travel, water sports, gut infections or from local epidemics. He specifically mentioned vaccinations and allergies as risk factors. The way to diagnose an enteroviral infection is first of all to have an high index of suspicion! 'Flu-like symptoms that persist for more than two weeks are highly suspect, but blood testing for antibodies can be misleading. There are often few physical signs, perhaps some ulcers on the tongue, possibly lymphadenopathy and tenderness of the abdomen particularly in the epigastrium, left iliac fossa and right iliac fossa. Sometimes there is sinusitis, colonic inertia and pelvic pain.

How well one deals with the virus depends on whether the immune system is in a state of Th1 or Th2 activation. If one is in a state of Th2 activation one will struggle to get rid of the infection and this state is characterised by allergy, female sex hormones (pregnancy, Pill, between menarche and menopause - ergo women are much more susceptible than men), excessive exercise, vaccinations or another recently acquired infection.

So for example Professor Huber pointed out that we all have HERV K-18 (indeed 8% of the human genome is made up of retrovirus) but the expression of this is induced by Epstein Barr and herpes virus, this activates virus in a way to produce a super-antigen which results in massive T-cell activation, i.e. inflammation. Epstein Barr virus is particularly good at doing this.

An awful lot of the discussion of the day revolved round immune responses to virus. My interest of course is in getting patients well and I have to say I dozed off during some of these discussions - partly because I'd had a 4am start and partly because I don't see the relevance of esoteric immune discussions when it comes the business of getting patients well! I see the immune system as the army of the body and all the various players have army equivalents. So natural killer cells are our soldiers with machine guns, B-lymphocytes and T-lymphocytes are the messengers rushing around telling everybody what to do as well as lobbing cytokines and antibodies - our bombs and grenades. In chronic fatigue syndrome much of this activity is self destructive - it's as if the army can't stop fighting foreigners and has embarked on a civil war.

What is clear is that the total load of virus during the early phases is critical. Indeed this is well established in HIV infections. The above issues do of course have implications for treatment and this is how I see it all fits together.
During the acute stage
Treatment of the initial viral infection

Keeping viral numbers down helps a lot. Viruses are killed by fever, one should rest up in bed to allow the immune system to be active, take high dose vitamin C which effectively kills everything in the gut - indeed in high doses this will cause diarrhoea and strip out virus yeasts and bacteria generally in the gut. An acid stomach will be protected against enteroviral infection because acid will kill virus. Do not take symptom suppression medication which reduces fever and pain because these are useful symptoms which kill virus - see Viral infections - avoid them and treat them aggressively.
Interventions to reduce inflammation
Inflammation is highly desirable in the early stages of viral infection but after two weeks probably counter-productive. Nutritional interventions to reduce inflammation will be very helpful. The problem with Western lifestyles is that with their high levels of sugar and refined carbohydrate, lack of sleep, lack of sunshine, chemical, physical and mental stress etc. they tend to be pro-inflammatory. This predisposes us to states associated with chronic inflammation - see Inflammation. All this will tend to be made worse by having poor antioxidant status - this is a disease-amplifying process - poor antioxidants means more free radicals means more inflammation. See

During the chronic stage
John Chia looked for Chinese herbs which had anti-viral activity - the idea here is to try to get rid of those last few viral particles that were causing so much havoc in terms of chronic inflammation. He came up with oxymatrine which he has now trialled in 500 ME/CFS patients and seen beneficial effects in 52%. In the short term this can increase symptoms, but in the medium term beneficial effects were seen in 52%. In a few of the responders and non-responders in which he measured cytokines gene expression there was an increase in the IL12/IL10 ratio in 7/7 and no increase in any of the 10 non-responders. Again those that responded showed low levels of enteroviral protein in stomach biopsies. This suggests that oxymatrine is useful in half of patients with chronic and low grade viral infections. Dr Chia has made up his own product Equilibrant which contains the active principle oxymatrine and recommends starting at one daily, gradually increasing to 3 twice daily according to clinical response. Expect to get worse initially, hence the need to start with low doses and build up slowly. My guess is Equilibrant will be more effective if the basic work up to treating CFS is followed (as in summary approach above!).
Paul Cheney and heart problems in CFS
I have already written extensively about Paul Cheney's work in chronic fatigue syndrome and how he demonstrates it is a symptom of low cardiac output - see and Patent foramen ovale as a cause of fatigue.

Essentially people with CFS have diastolic dysfunction. Let me explain. One would think that the hardest job of the heart was the business of pumping blood round the body as it contracts. Interestingly this is not the bit that goes wrong in chronic fatigue syndrome. What goes wrong is the ability of the heart to fill with blood during the relaxation phase. This doesn't happen properly and it is called diastolic dysfunction. Essentially the heart muscle is stiff and doesn't relax so the heart doesn't fill with blood properly and therefore there is less available to pump around the body. So this begs the question why is the heart muscle stiff?

In order to contract, muscle needs calcium. In order to relax it needs magnesium and we know magnesium deficiency is pretty much pandemic in CFS. Magnesium is also necessary in oxidative phosphorylation in order to make ATP, furthermore it is also necessary for ATP to release its energy and be converted to ADP. So magnesium is centrally important in energy production and muscle function in the heart.

I see the heart as working like a coiled spring but in a rather counter-intuitive way. During relaxation energy is required to pump calcium out of cells and drag magnesium into cells. This is a little bit like charging up a battery with electricity. When the heart contracts this is triggered by a bolt of lightening as calcium suddenly influxes back into cells and magnesium out - indeed this bolt of lightening is the energy by which this process happens. So relaxation is coiling of the spring and contraction is its release - as I say rather counter-intuitive!

Mitochondria are centrally important in this diastolic dysfunction. I have to say that if I were Paul Cheney and delivering his lecture I would find it impossible to give the lecture without discussing mitochondrial function. Afterwards when I spoke with him he agreed that mitochondria are likely to be centrally important in diastolic dysfunction.

This low output cardiac state explains a great many of the symptoms of chronic fatigue syndrome from low blood pressure, postural orthostatic tachycardia syndrome to low energy levels, lack of stamina and foggy brain.

There are further complications to this low cardiac output state - if the ventricle of the heart doesn't fill properly the heart responds by trying to squeeze more blood out of it to maintain blood pressure. This intense constriction can collapse the left atrium in a process called cavitation. When this happens blood is sucked from the right side of the heart and can blow open patent foramen ovale. When this occurs of course blood is shunted from the right side to the left side, doesn't pass through the lungs and oxygen levels can drop precipitously. So a patent foramen ovale again is a symptom-magnifying process that occurs downstream of poor mitochondrial function - again see Patent foramen ovale as a cause of fatigue.

So heart pathology is centrally important in chronic fatigue syndrome and the treatment of course is to address mitochondrial dysfunction.
A very worthwhile day! Professor Malcolm Hooper chaired the whole day and ran an excellent question and answer session at the end of the day. He brought the discussion back to reality by asking pertinent questions of the Panel of speakers about implications for treatment and this gave me a chance to explain the importance of mitochondria and how they explain many of the facets of CFS/ME. Let's face it - every living cell needs to be powered by energy! This explains the great many symptoms we see in CFS. I will give you some examples:

Foggy brain - the brain weighs 2% of body weight but consumes 20% of the total amount of energy of the body! No wonder cognitive function in CFS is slow. See,_difficulty_thinking_clearly_etc

Light intolerance - the retina is part of the brain and this consumes more energy than any other part! No wonder there is light intolerance - there just is not the energy needed to process!

Heat intolerance - the skin is the largest organ of the body - to lose heat we need to pump blood round the skin - CFS patients just do not have the cardiac reserve to do this - they cannot tolerate hot days. See

Understand what is going wrong and you have the key to treatment! This Invest in Me day helped us all to understand better the underlying processes that result in CFS/ME.

Monday, 24 May 2010

Fifth International ME Conference

is today.

Next year I promise myself I will marshal my physical, mental and financial resources and attend.

A very brave group are also planning a march today, so good luck to them and thanks for acting on behalf of so many others with the disease.

I'm thrilled to see that this year's conference is going to be available on DVD - I'll for sure be ordering myself a copy, and so9 able to take in all the information in 'manageable chunks'. This is a very thoughtful move on the part of the organisers, as many with ME have concentration problems - I know I find that after a while words simply turn into noise, lodging no meaning or lasting impression in my brain.

And a heads up for next year - if anyone with a non-ME brain and body fancies attending, I'm going to be looking for a partner to attend with (or to go without me if I have a flare and can't go), and to help write up the conference afterwards.

Wednesday, 12 May 2010

How did I get here...?

This is a post I've been putting off writing ever since I started Wood of Thorns. It should logically have been the first post - how did I get ME? Obvious, really.

Somehow, I've always found an excuse not to write it - too self-indulgent, perhaps, not as important as linking to new information about the condition, so much other information to get out...and all of that is, of course, self-deceiving bobbins. I haven't written about how ME entered and smashed up my life because thinking about my life pre-ME, how much I loved it, all the possibilities I thought I not only had but would always have - hurts. It hurts a lot. Admitting that it's gone, and isn't coming back, still makes me want to roll about on the floor like a toddler in a tantrum yelling "it's not fair!!!"

However, it's Awareness Day and I'm all out of excuses, so here goes.

My answer to those who assert people invent ME for themselves to escape from their horrible lives is just this: my life the month ME arrived was sweet. It was so bloody sweet that it hurts to remember it.

It was Autumn but the garden was still full of late roses. I loved that garden. My new(ish) partner and I had moved in together in the Spring. We adored the house we were renting - we admitted to ourselves that we secretly hoped one day to buy it, once we could afford it. The joy and excitement of having a new partner (now my husband) hadn't faded an iota by Autumn, it was simply enhanced by a growing sense of deep contentment. We had begun to talk seriously about starting a family.

I had a job I loved - working in the Historical Record Office at Huntingdon. Who would have ever thought my History degree would come in useful for work? I loved the people there, the work fascinated, I loved the smell of the old documents and brand new storage boxes. It seemed seriously possible that my employers would support me in studying for a full Archivist's qualification.

Physically, I was fitter and thinner than I had been in years (I know, way to be shallow, but I do miss it!). In 2003 I'd taken part in a 100km sponsored trek in Iceland, fund-raising for Macmillan. By 2005 I was no longer quite at that level of fitness but I was doing pretty well. After all, m,y job required me to run up and down stairs a dozen times a day, as well as climb ladders and lift boxes/books. I was wearing size 10 clothes (hard to imagine for anyone who has only ever seen me weighing in at my current size 18).

Then I got flu.

That's it.

One of those hard, fast, 72-hour flus. (Tests said it was 'influenza B, if that means anything to anyone.)

And I never got better. I seemed to simply stay in the aftermath stage anyone who's ever had real flu will recognise - exhausted, aching, head full of mist and glue, dizzy, sick, sweating, weak as a kitten, sore throat, swollen glands. I felt almost exactly as I had when suffering from glandular fever, but tests showed it wasn't that this time. Trouble was, they didn't tell me what it was.

My GP did her very best to help. Come December, I was still signed off work with 'post-viral fatigue'. My doctor told me she suspected ME, but that couldn't be diagnosed until the symptoms had persisted for six months.

In January, I tried to return to work. Major mistake. The people I worked with couldn't have been lovelier - but my employers, the County Council, couldn't have been less help.

I was supposed to try a slow and gradual return to work, one that recognised I might at first manage no more than an hour a day. All the physically-demanding aspects of my job were to be set aside - I wasn't to climb ladders, fetch anything from the downstairs document storage (the office where I worked was on the first floor and there was no lift). No lifting at all, ideally. This, I hasten to add, was the recommendation of the Council's own medical staff, by whom anyone longterm sick had to be reviewed.

I'd been prescribed amitriptyline to help with pain and disturbed sleep issues. It did help somewhat, but taking it at night left me muzzy and 'out of it' most of the morning - certainly unfit to drive to work. So I was to try working in the afternoons.

Did I say my employers were unhelpful? What I actually mean is, they were fucking evil.

Within a fortnight, there was pressure to know when I would be back up to full hours. No chance was lost to make me know how hard I was making life for my colleagues by not 'pulling my weight'. The Record Office had only 2 spaces allocated for 3 employees in the car park next to it - and they refused to allocate one to me, meaning I had to park in a public car park ten minutes' walk away - by the end of a 40-minute drive and then that walk I was generally ready to collapse and go right back home. I started simply parking my car on the pavement outside - if I got a ticket I'd just have to deal with it.

Of course, the Council's doctor had recommended urgently that I be transferred to the Cambridge Office, which I could reach without a long drive - I could,in fact, drive to a Park and Ride 2 minutes away from home and get a bus that stopped outside - and which had a larger staff which would be less impacted by my shortened hours and reduced abilities. Without the long journey,I would hopefully be able to work more hours. One of the staff in the Cambridge Office would happily have job traded with me, since she lived in Huntingdon...or I could be transferred to a different department for desk-only duties.

But my employers wouldn't do this. Don't ask me why they insisted I saw their doctor then ignored his decision and recommendation. The obvious reason seems to be the true one - they did not want to abide by their own code of conduct with regard to a severely ill employee, so they made life so difficult that I would quit. This is a County Council that employed literally thousands of people, but I was asked to believe there was not a single department to which I could be transferred to do less physically-demanding work.

The predictable happened - I got iller and iller and relapsed. And in the middle of all this, my grandmother died, causing my mother to become very ill indeed - and I had to keep travelling to Cheshire to try to help. My doctor was now diagnosing me with ME for certain.

Just to repeat that - my doctor made that diagnosis. I had barely heard of ME. I don't know where this public fiction of crazy ladies self-diagnosing with ME then 'doctor-shopping' till they get one who will agree, comes from. I can tell you, it's a hurtful and insulting image - insulting not just sufferers but their doctors.

At this point I decided to let my employers win, and I left my job. I was too damn tired for a fight - every ounce of energy was being spent just on getting to and performing those limited hours of work while being subjected to constant pressure. There was no life left outside that, for me or my partner (who was now my fiance, brave man that he is). Yes, reader, I quit. It seemed that it was a clear choice between fighting to stay employed and making myself iller every day, or giving in and trying to get better. Except for the occasional proof-reading contract (and a tiny joyful time writing for a children's book on dinosaurs) I haven't worked since.

Oh and - I also have never claimed a penny in benefits between then and now. Cowardice again - I have met too many made sicker by fighting the benefits system, and we decided that we would rather stay a bit poorer than have our lives revolve around a constant fight and series of aggressive reviews. I had the luxury of that decision, courtesy of my 100% supportive partner. Many don't. I really believed then that if I gave myself a year, really focussed on getting better,I would recover - at which point I would go out and get myself another job.

I noticed an odd thing, after I left work. I became invisible. I was no longer part of any 'system'. While I was still employed, my health was regularly monitored, because I needed to be certified as fit or sick for work. Once that was no longer necessary, there were no review appointments to see if I were better, sicker or the same. I didn't require check-ups to assess my entitlement to benefits, because I didn't claim any. And so, my health simply fell into a black hole. I started doing my own research into this weird condition I was told I had.

One result of this was that as Summer approached (I'd now had ME in my life for about 9 months) I went to my GP explaining that I felt as ill as I had back in the Autumn, and asked if I could be tested to rule out any non-ME possibilities such as lupus. By now I was desperate to know what was wrong, what was happening to my body, concentration levels, life.

I was sent to Addenbrookes to see their 'ME specialist'. I do wish I could remember the name (I suppose I should request my records). I had bloodtests, scans, x-rays...and there was nothing to explain what was wrong. It was officially official - I had ME. As you might expect, one of my first questions was 'so what does that mean - I mean, how long am I likely to take to recover?' Because still no one had told me that you don't recover. And the specialist said:

"You will be completely recovered in one to two years. Anyone who thinks they have ME for longer than that has a mental problem not a physical one."

On the basis of this inaccurate and irresponsible statement, we decided to stay in our beloved house and break into our savings to pay my share of the rent. Because, after all, it was only for two years at the most! We could just about manage that, and once I was back at work we'd pick up where we had left off in Autumn 2005.

In the meantime, I asked my GP if it might be possible to see someone for dietary advice, as many people seemed to have managed to reduce their symptoms by changing diet, checking for allergies and intolerances, etc. My doctor regretted to advise me that I stood no chance of being referred for this - 'if you're not diabetic, you'd wait years'. But she did have one thing she could offer me. She could send my for Cognitive Behavioural Therapy. Lucky, lucky me.

CBT really is a whole 'nother post, so I will be brief about it here. It did not 'cure' me. It did not cure anyone else in the group that I know of (one member was doing it for the third time - did no one see that she wasn't cured?). I wondered frequently which sadistic bastard had decided to hold it on Friday afternoons when some members of the group were still struggling into work for reduced hours and could be pretty much guaranteed to be at their most knackered and ill by Friday afternoons...CBT did, among a lot of twaddle, teach some useful coping skills, especially those closely related to pacing. At the end of the course I was as ill as when I began, but I had some tactics for working 'round' my condition. It wasn't 100% unhelpful,it just isn't in any way curative. No one in the group I was in bought into any bullshit about us having 'inappropriate illness beliefs' and the group leader didn't push it (perhaps because he knew the room would be empty the next week if he tried).

And that was - well, almost it.

It's now 2010. I am not back at work. My physical condition is a little better than it was then -I don't spend half of every day in bed - my concentration and coordination levels are much worse, almost as if there has been an odd kind of trade-off. Dizzy spells have recently added their unique contribution to the ever-changing feast that is ME. I have not been able to drive for the last three years. I have entered peri-menopause and the baby my now-husband and I talked about will never happen.

And my 2005 life shimmers like some luscious, irresistible thing that I once had and can't ever have back. So forgive me, if most of the time I try not to look back at it. Or too far forwards.