Jen Brea’s wonderful docu-film on M.E. ‘Unrest’ is still being shown around the world and if you haven’t seen it yet and suffer from chronic illness or care for someone who does you absolutely should, whether you have M.E. or not. It was recently screened at UC Berkley and there followed a panel discussion with some of the leading M.E. researchers in the world which is available to view for free here. I learned nothing from the discussion that I didn’t already know but it made a refreshing change to hear Ron Davis’ honest point that we have no idea as yet what causes the disease and I was heartened to learn that he shares my hypothesis that it is a single entity and will turn out to be something very simple. M.E. causes widespread symptoms, the severity of which differs between patients (as happens in other neuro-immune diseases such as Multiple Sclerosis) but the causal trigger will be the same mechanism for everyone and IMHO will be an issue with our immune system. I will not be swayed from this view so don’t bother trying 😉
One of the points that I took away from the discussion, which involved questions from patients, is how we all have our own bias when talking about M.E., myself included. Erik Johnson, a long term advocate of CFS, believes his and many other people’s illness was triggered by Sick Building Syndrome/mould. Another patient asked about EMF (electromagnetic fields) and their role in the disease. I read lots of comments online from patients who are convinced they know the cause of M.E. and it’s x, y or z depending on how their own illness developed, none of whose views I share.
My own illness was triggered by a viral infection but later made significantly worse by travel vaccinations, however I don’t blame the vaccine or any component of it such as preservatives or heavy metals for making me ill – I blame my immune system for not responding appropriately to the injection. Just like I blame Erik’s immune system for not responding appropriately to mould, not the mould itself. As I said earlier I’m convinced that a breakdown in the functioning of part of our immune system will turn out to be the cause of M.E. and the triggers will vary – for some it will be vaccinations, for others mould exposure, for others viral infections and so on. It’s the only model which fits everyone.
M.E. can, and does, run in families so of course the subject of genes came up. I’m not convinced by the genetic argument or that genes are particularly implicated, at least not at the level we currently understand. What I do think is that our immune system is genetically influenced, for example parents with allergies often have children prone to allergies, so it stands to reason that the potential for the immune system to be dysfunctional can be genetically inherited but again the environmental trigger for that dysfunction will differ from person to person. I’m unconvinced, however, that the conclusion is going to be that ‘gene x mutation predisposes towards M.E.’. The answer is going to be simple but not that simple.
The one thing I am utterly convinced about is that M.E. is treatable, no matter how seriously ill a person is, and that full recovery is absolutely possible. It may be that we need to take medication for the rest of our lives to keep our immune system functioning healthily but I know I have glimpsed almost full remission following changes in my immune system (when starting with a cold for example) and if we can replicate these changes using drugs returning to full health is not beyond the realms of possibility. In fact, it’s a certainty. Having said all that, decades of illness will have affected our bodies and things like heart disease and osteoporosis from years of inactivity will be a lingering legacy.
‘Unres’t is available to view on DVD, Netflix, iTunes, Google Play, Vimeo and other platforms.