A Glimmer Of Hope
This is a good news story, so bear with me and see where it leads.
Victims of the condition variously labelled Chronic Fatigue Syndrome (CFS) or Myalgic Encephalitis (ME) are used to being disbelieved, disrespected, and ignored. They know about being labelled liars, shirkers, fantasists.
That’s on top of being terribly ill — racked with pain and migraines, unable to absorb nutrition, unable to bear noise or light, unable to get out of bed, yet never refreshed from sleep. You can die of M.E.; you can, mysteriously, recover completely; or you can live with it for decades.
There is no test for M.E. And there is no cure.
Although ME has been around since the 1930s (at least), when it was thought to be related to polio, no biomarker was found. This is partly because in the last three decades, psychiatrists got hold of the disease. M.E. turned into Yuppie Flu. It was all in the head they said. It could be cured by a positive attitude and something called “graded exercise therapy” , even though patients knew that exercise made the condition worse. So no investment was made in finding out if there was an organic cause.
The medical establishment accepted psychiatrists’ claims and patients were treated accordingly. Insurers did the same.
Imagine the isolation and stigma of being told you have a disease that’s “all in the mind”, when you’re lying in pain in the dark.
Yet around 250,000 people have it in this country, around a million Americans have it; 150,000 French people. In Sweden and the Netherlands 2-3 people in every hundred have M.E. In Nigeria, apparently, prevalence may be even higher but statistics are hard to gather. Are all these people just lazy or deluded or both? In the States, Native Americans and African Americans are more likely to get it. At my older daughter’s small school, four children have it, at my other daughter’s big school at least four have it — not including the ones who have had to drop out.
That’s the background — it’s a Neptunian fog, a mystery illness. You can hear the Neptune in the words used — shirker, liar, fantasist, fatigue. A major symptom of M.E. is “brain fog”.
But after years of shouting in the wind, people with M.E. have had a lot of good news in 2015 — and not just from one quarter. After more than 30 years of being labelled crazy, lazy and much worse, finally, validation has been coming thick and fast. It feels good.
First, scientists at Columbia University found biomarkers which showed that people with M.E. had some weird stuff going on physically. This was the first “robust” evidence that could lead to a cure. Then in February the US Institute of Medicine released a report showing that “Chronic Fatigue Syndrome” was a real illness: this was a landmark. It bluntly stated that M.E. is not a psychological illness but a physical disorder. Then the US National Institute for Health reclassified the disease and promised to invest millions in investigating its causes.
A sea change was taking place. Ideas that campaigners had been pushing for decades were becoming reality. But the mainstream media — and the British National Health Service — were slow to catch up. The odd article was beginning to crop up (in The Washington Post, The New Yorker, The Atlantic, HuffPo), but the public discourse around M.E. stayed the same. This was partly because the biggest clinical trial of M.E. treatments, the so-called PACE trial, had apparently shown that graded exercise therapy and cognitive behaviour therapy cured the disease.
Then at the end of October, a long article by David Tuller, coordinator of the masters degree program in public health and journalism at UCLA Berkeley, was published on the Virology Blog. In it Tuller showed how bad science had distorted results of the key trial used to justify psychiatric treatment of M.E. The so-called PACE trial, published in the prestigious peer-reviewed journal The Lancet in 2011, is used to develop national policies for M.E. around the world. It’s cited by disability assessors for insurers and governments.
The trial claimed to show that exercise and positive thinking would cure this illness. It turns out that, just as campaigners had been saying, it was based on bad science. For example, you could go into the trial and get worse, yet still count as “recovered” in the results.
So where’s the astrology in this, you may ask, and why am I writing about it? Well, my daughter has had it for several years, and M.E. has put my whole family on trial, so I feel pretty passionate about it. And there’s some interesting astrology involved.
First of all, the counter-argument to the medical establishment would have been impossible without the internet and the efforts of “citizen scientists”. M.E. affects all kinds of people — including doctors, statisticians, biologists and their nearest and dearest — just the kind of people who can test and question medical “fact”. For the last couple of decades, they have been able to communicate through the internet, comparing notes, sharing information, lobbying, and discussing what works and what doesn’t. It’s been a type of crowd-sourcing.
This is Uranus (the planet of science) and Neptune (mystery illness) through Aquarius and Pisces in the noughties, gathering information, making connections, networking. This is the hive mind at work.
But it’s also Uranus in Pisces (2003-2010) in another way: science in the sign of illusion and dissimulation. Why were medical professionals, for example the head of the Royal College of Psychiatrists, so keen to turn M.E. into a case of mind over matter? You may well ask about vested interests, lying and obfuscation, and find that advising insurance companies is quite lucrative.
Uranus is now, of course, in Aries. The sign of fresh starts, the individual, pioneers and really making things happen. It’s a planet of the collective in the most individualistic of signs.
Neptune is now in Pisces, and opposite Jupiter in Virgo (the sign of hygiene, healing and data) since September: the mass of people with M.E. is too large to be ignored now, and so is the data.
The first two pieces of good news — the Columbia trial and the Institute of Medicine report — came earlier this year as the Sun conjoined Neptune in Pisces: a light was shone on the victims of the mystery illness. The Sun then moved on to Chiron (the healer/doctor) also in Pisces. Meanwhile, Saturn in Sagittarius (the sign of publishing) was squaring.
(Saturn is also traditionally associated with science, so combining that with geeky Uranus in adventurous Aries and we should expect to see a lot of groundbreaking science published in the next couple of years. Just look at the pictures coming back from our space.)
When Tuller’s article was published, Saturn in Sagittarius was approaching the square to Neptune in Pisces again. It was time for some cold, hard facts (Saturn) to wake up the doctors from their illusion (Neptune), and also for some solid (published) support for M.E. patients. Psychologist James C Coyne, a well known academic and adviser to the European Commission, has also posted now about the PACE trial and pointed out that The Lancet needs to retract the findings not just because they’re flawed but because they damage the reputation of medical science. So far the doctors behind the PACE trial have refused to release the raw data, so it cannot be checked by outsiders.
Two concrete results (Saturn) of Tuller’s article (Sagittarius)? An apology from The Daily Telegraph and a letter signed by a dozen or so top scientists demanding that The Lancet take back the PACE trial.
For M.E. sufferers, some of whom have had the illness for decades, there is a glimmer at the end of the tunnel at last. If we can understand the biology of the disease, then surely we can find a cure. At least, people with M.E. should no longer be stigmatised.This is what happens when the planet of hope in practical, health-conscious Virgo contacts the planet of mystery illness in the sign of faith, Pisces, and when both are forced to take real action by the taskmaster Saturn.