Over my 32 years with ME I’ve been very hesitant to attribute any improvement or relapse to anything I’m doing at the time. This is because my most obvious pattern of symptoms has been random fluctuation: mostly it’s been impossible to figure out why I have good and bad spells.
But I think there’s a good chance that Traditional Chinese Medicine (TCM) has helped me. When I was first ill in the 1980s I had treatment from a very skilled TCM practitioner (Giovanni Maciocia) for several years and I got back to work in the 1990s.
But I started to get worse in 2004, after a very minor skiing accident which led to widespread pain and a diagnosis of fibromyalgia. Between 2008 and 2012 I had spells of feeling very ill and being bedridden for months on end. Even during better periods I often needed to be lying down most of the day. I could barely look after myself and was at my worst ever. Unfortunately Giovanni had moved to the US, and the TCM practitioners I found in London were of no help. I tried many other treatments (including lymphatic drainage massage from the Perrin clinic, all kinds of very expensive treatments from the Breakspear clinic, and long-term antibiotics and anti-virals) but they had no effect at all.
On the recommendation of someone on this Board, in the summer of 2012 I started to see a Chinese doctor who practises in London and Sheffield – Dr Dan Jiang. After six months of mostly fortnightly acupuncture and twice-daily Chinese herbs I slowly began to improve. I’ve been seeing her for two and a half years now and I have long periods of feeling 90% well. I still have relapses, usually when I’ve been in contact with someone with a virus infection, but they normally only last two or three weeks at most.
I thought I’d wait a good length of time before reporting on this, as I think you have to take a long-term view of this condition and anything you try. And I’m still fearful of suddenly getting very ill again. But most of the time my symptoms are quite mild. I still wake up feeling pretty awful, as if I’ve got a mild hangover, with muscle aches and slight depression. But these improve during the morning, and most days I lead a pretty normal life. Some days I can walk several miles.
When I’m in a relapse, the same old distressing symptoms return, sadly very familiar to all of us, I imagine: feeling like I have bad flu, aching all over, bad headache, no appetite, gastro problems, extreme weakness, sweating and shivering, dizziness, 'wired', very fast heartbeat etc. (I would never say I have ‘fatigue’, rather the experience is of feeling terribly ill, with such utter exhaustion that, when at my worst, recovering from taking a couple of steps required sleeping for 30 minutes.) But now the symptoms aren’t as severe as they were and don’t last as long.
It may be that my improvement would have happened anyway and has just coincided with the TCM treatment; it’s impossible to know. But a couple of times I’ve been given some milder herbs in the form of powders, rather than herbs you have to boil up, and each time I’ve regressed a bit. This, together with the fact that I improved while having TCM in the 1980s, is some evidence to suggest that the treatment may be doing something.
Here’s a link to my practitioner’s website, which describes her practice and includes a link to an article she wrote some time ago about treating people with ME. It’s just an informal, uncontrolled study, but it shows where she’s coming from.
http://www.jiangacu-herbconsultant.com/
Hope this helps someone.
But I think there’s a good chance that Traditional Chinese Medicine (TCM) has helped me. When I was first ill in the 1980s I had treatment from a very skilled TCM practitioner (Giovanni Maciocia) for several years and I got back to work in the 1990s.
But I started to get worse in 2004, after a very minor skiing accident which led to widespread pain and a diagnosis of fibromyalgia. Between 2008 and 2012 I had spells of feeling very ill and being bedridden for months on end. Even during better periods I often needed to be lying down most of the day. I could barely look after myself and was at my worst ever. Unfortunately Giovanni had moved to the US, and the TCM practitioners I found in London were of no help. I tried many other treatments (including lymphatic drainage massage from the Perrin clinic, all kinds of very expensive treatments from the Breakspear clinic, and long-term antibiotics and anti-virals) but they had no effect at all.
On the recommendation of someone on this Board, in the summer of 2012 I started to see a Chinese doctor who practises in London and Sheffield – Dr Dan Jiang. After six months of mostly fortnightly acupuncture and twice-daily Chinese herbs I slowly began to improve. I’ve been seeing her for two and a half years now and I have long periods of feeling 90% well. I still have relapses, usually when I’ve been in contact with someone with a virus infection, but they normally only last two or three weeks at most.
I thought I’d wait a good length of time before reporting on this, as I think you have to take a long-term view of this condition and anything you try. And I’m still fearful of suddenly getting very ill again. But most of the time my symptoms are quite mild. I still wake up feeling pretty awful, as if I’ve got a mild hangover, with muscle aches and slight depression. But these improve during the morning, and most days I lead a pretty normal life. Some days I can walk several miles.
When I’m in a relapse, the same old distressing symptoms return, sadly very familiar to all of us, I imagine: feeling like I have bad flu, aching all over, bad headache, no appetite, gastro problems, extreme weakness, sweating and shivering, dizziness, 'wired', very fast heartbeat etc. (I would never say I have ‘fatigue’, rather the experience is of feeling terribly ill, with such utter exhaustion that, when at my worst, recovering from taking a couple of steps required sleeping for 30 minutes.) But now the symptoms aren’t as severe as they were and don’t last as long.
It may be that my improvement would have happened anyway and has just coincided with the TCM treatment; it’s impossible to know. But a couple of times I’ve been given some milder herbs in the form of powders, rather than herbs you have to boil up, and each time I’ve regressed a bit. This, together with the fact that I improved while having TCM in the 1980s, is some evidence to suggest that the treatment may be doing something.
Here’s a link to my practitioner’s website, which describes her practice and includes a link to an article she wrote some time ago about treating people with ME. It’s just an informal, uncontrolled study, but it shows where she’s coming from.
http://www.jiangacu-herbconsultant.com/
Hope this helps someone.