15. Where Are You With ME?

Do some people with ME find that their symptoms get better or worse depending on where they are? Or depending on the weather? It is called the “Location Effect”.

Hello! It's been some time since my last main video. In it, I said that when you've got M.E, it’s essential to rest and to pace yourself, and not to exercise or do too much activity, which gives you that horrible mixture of symptoms which gets called "post-exertional malaise" - terrible weakness, feeling sick, as if you’ve got bad ‘flu, awful pain, fever, a racing heart, crippling brain fog, and all the rest. Soon after that video, I had a message from someone, who just said that, actually, there are times when people with M.E can do more, even aerobic exercise, like hiking, without feeling like that. Or, more specifically, maybe, there are "places"!

So, I started to learn about the “Location Effect”. There are hundreds of stories on forums and Facebook pages, about people whose serious ME symptoms would all but disappear when they were in a different place. Dr Sarah Myhill, in her e-book, says that some ME patients' symptoms do actually improve when they are on holiday for a couple of weeks somewhere dry, or right by the sea, or at a high altitude, - and that they might not realise why, and they might wrongly think it's because of being away from stress, or because of the sunshine. Several of my friends with bad ME, while they’re on holiday in south or east Europe, or on the African coast, or certain parts of America, feel almost normal and well again, and can do normal tourist things all day! But then within 2 or 3 days of being back home, every one of their ME symptoms returns, often even worse than before, and they can't do anything again. Since I first got ill with ME, definitely the best health I had, compared with how I was generally at the times, were during three trips to France. And I always feel best right by the sea, too.

Also, quite a few of the ME recovery stories I’ve heard involve a change of lifestyle or taking time out, in a different location, often a tranquil one. Now, I know that emotional stress can really affect anyone’s health - but from the people I’ve known and talked to, it’s absolutely not just being able to unwind on holiday or giving up a busy job, that’s causing this effect. And it’s not simply the blue skies or the sunshine. It is something about the location. People with ME who have travelled and noticed this effect seem to find that some whole countries are worse for their symptoms, some regions or cities, and even down to just some streets or buildings. For example, I know of people who had moved away from London, and now find they can't move back there without having a relapse. My symptoms are worse after a day in London, no matter how much activity I have or haven't done. And I’ve been inside some houses, where I know that, if I lived there, my ME would go downhill again. The best locations tend to be the most pristine, least polluted, and sometimes least populated areas, but the places which also have the driest climates, or which are on the coast by seas or oceans.

But there’s also another interesting effect, which is that a lot of ME and fibromyalgia sufferers can tell you what the weather is before they’ve even opened the curtains or the window. And I can tell what the weather is first thing in the morning, from how my ME friends tell me they’re feeling. Their symptoms are always worse when it’s damp or very stormy. It seems to be especially when there's a sudden drop in barometric air pressure, just before a change in the weather. And they always get worse at the start of Autumn. Many people with ME, in the UK and in much of America, feel better in the summer. And if they're bed bound, then it can’t be vitamin D that's doing it. In certain other locations, dampness or humidity aren’t necessarily a problem - so it’s something about what damp or stormy weather, or autumn and winter, can do, in some places. I've just heard of something a young girl said recently. She lives in a city in the USA that's recognised as a "bad location", but she is healthy, but when she went out to a rural campsite in the middle of nowhere, she suddenly said, "The rain doesn't feel sad here," (like it does at home). I know what she means - don't you?

For now, I'd just like to try and summarise what I think about the diagnosis of M.E: Firstly, I believe quite a lot of people are given the label of M.E or Chronic Fatigue Syndrome when they shouldn't be. People who are just "tired all the time", or have just a couple of the symptoms, or who have something completely different but are not diagnosed correctly, and when CFS is used as a “wastebin diagnosis”. Then, there are some others who do have the hallmark symptoms of M.E - the Post Exertional Malaise that’s far more than just fatigue, the cognitive brain symptoms, problems with sleep, with dysautonomia and hypersensitivity, temperature regulation, blood pressure and hormones, the broken immune system, - and often problems with pain, seizures, and heart, digestive and emotional symptoms, - but for them, a quite specific cause, and hopefully treatment, can be identified. I've known people who by all accounts have really had M.E, but it has actually been, at least largely, down to hyperventilation, or side effects from powerful medications (which have sometimes been prescribed because something else was misdiagnosed!), or a vaccination reaction, or from adrenal fatigue caused by something in particular, or yes, even from burn-out, or from the physical effects of post traumatic stress disorder. But thinking about it, most of the people I've known with those things, haven't had quite the same, full complex and longterm problems as lots of other people I know with ME that isn’t only caused by those. And then there are cases of pesticide poisoning, sheep dip poisoning, Gulf War Illness, disease suffered by New York 9/11 survivors and rescuers, Lyme and mycoplasma diseases, which can all look just like ME - especially when biological tests aren't usually carried out. Or, are they all examples of the same disease as ME? I'm not ready to try to answer that!

But I have spoken to, or heard from, hundreds and hundreds of people diagnosed with ME or CFS, and I'm tending to agree with the late Thomas Hennessy Junior, who was a leading campaigner about neuro-immune diseases, who sadly died recently; he said that ME looks like “Different assaults, giving the same results” - that is, different triggers or loads can seem to lead to the same complex disease. From the evidence, I believe that the cause of ME is not a virus, but is something - or some things - that causes two problems: the front-line of the immune system is “flattened”, or unable to do its job, leaving you as defenceless prey to any infections and so on; but at the same time other parts of the immune system are on an unstoppable overdrive, with all the inflammation, cell damage, flu-like exhaustion, and allergies - although the exact balance between underactive and overactive parts of the immune system might possibly vary, in different outbreaks and different subsets of patients. And secondly, as well as that, there is a severe neuro-toxicity, or poisoning of the nervous system - with all the brain and autonomic, hormone and emotional symptoms.

I’ll just quickly go into a sciencey bit. In the Nevada Lake Tahoe disease of the mid-1980s, which was one of the worst ME outbreaks there has been, and the one that led to the American authorities giving it the pathetically unsuitable name of Chronic Fatigue Syndrome, patients were found to have a huge set of alarming biological and physical abnormalities. You can read all about it in Hillary Johnson's excellent, detailed book 'Osler's Web'. Even just amongst the immune system and blood tests, people had very low Natural Killer cell and B cell function; abnormal B cell morphology; red blood cell sedimentation rates shockingly of zero; a huge rise in pro-inflammatory cytokines; raised RiboNuclease L and RNA destruction and lots of cell debris; very high interleukin 2, inverted ratios of T1 to T2 lymphocytes, and of CD4 “helper” T cells to a low number of CD8 “suppressor” T cells - which is the mirror image of AIDS. There were also “Unidentified Bright Objects” on MRI brain scans, autonomic and heart problems which showed up, and more.

And just as a slightly odd aside, did you know that if you're somewhere near a neutron bomb when it goes off, it's probably not the blast or the heat or even the direct effects of the radiation poisoning that you need to worry about, unless you're right under the "hot zone". But the neutron radiation from it completely erases your immune system function. Which you might not notice, until the very first tiny bit of cold bug or virus or something you come across - which with no immune system would then likely eventually be fatal.
I'm not saying that ME is caused by radiation. But it just makes me think that, perhaps, when people say that their ME started with a bad virus, is it possible that their immune system was already weakened because they already had ME, and that succumbing to that virus might simply have been the first unmistakable sign of the underlying disease? Like an "acquired immune deficiency"?

In Dr Byron Hyde’s excellent “Definition of ME” (by the Nightingale Research Foundation, Canada, in September 2011), he says that before someone has ME, they often have a vulnerable or overloaded immune system, and that patients may develop autoimmune or other illnesses too. He also notes, amongst other things, that ME outbreaks have a peak of illness at the end of summer. But he concludes that enteroviruses are the only known type of virus that could possibly fit all the unusual observations, and that perhaps just one virus “could have the capacities to cause significantly different diseases”. But I wonder, what if different viruses, and different triggers, all through one type of mechanism, or one type of immune deficiency, could have the capacity to cause the complex and overwhelming field of illness called ME? Different assaults, through one type of mechanism, giving the same range of results?

I'll be back again soon, to share what learning about the Location Effect has led to, for me and for others. Putting it into practice, some people who were bed-bound with extremely severe ME for years, were so desperate they had nothing to lose. And with some pretty remarkable insight, they took some unlikely steps to get away from whatever might be making them ill, and soon ended up climbing mountains!