I realised I was hijacking a thread on Rituximab and another auto-immune drug, Enbrel, because Sherlock raised an interesting question about other ways to break the pain/inflammation cycle:
Until you mentioned ice baths, I had forgotten that about 20 years ago in the UK, a doctor wrote in a major national newspaper, the Daily Mail, about a therapy he was trying for ME patients involving cold baths. I think he might have been a rheumatologist but I can't remember and I can't remember his name, either. I thought he was going to do a proper trial but he just seemed to vanish.
The treatment involved taking cold baths at 16 deg Celsius lasting for 20 mins (?). He advised starting at 23 deg on Day One and gradually dropping the bath's temperature by a degree per day (?) until reaching 16 deg. His full protocol was published, encouraging people to try it - I bet a lot of UK patients had a go.
[Edit: my memory on this was wrong, now that I've read the media coverage (link below) - the adapatation process actually took several weeks, with probably at least a week at each temperature before moving down a degree.]
At the time, I had been confined to bed for several years and only able to leave it for a total of maybe an hour a day, including trips to the bathroom. I had then (and have now) acute viral-onset ICC/CCC ME.
The short-term results were spectacular. I improved considerably and within (if memory serves) a few days of hitting 16 degrees, I was able to go for a long walk - a mile? A couple of miles? - outside the home. This held up for a week or so until I caught some new infection (or possibly the originating infection reactivated because I pushed it, who knows) and I was back where I started.
I kept up the cold baths for 18 more months because, unpleasant (I'm not kidding) as they were, I was desperate. They had absolutely no further effect.
What was your rationale for mentioning ice baths, Sherlock? At the time I thought the idea was that it was something to do with adrenaline but I could easily be misremembering this - it's so long ago.
By the way, I imagine there are risks to ice baths, if anyone is thinking of trying them! Like a massive heart attack!
I used to play a particular music tape to keep my mind off the pain. If I hear the first song from that tape on the radio these days, it takes me in my mind straight back to that bath. And not in a good way. Ow!
Until you mentioned ice baths, I had forgotten that about 20 years ago in the UK, a doctor wrote in a major national newspaper, the Daily Mail, about a therapy he was trying for ME patients involving cold baths. I think he might have been a rheumatologist but I can't remember and I can't remember his name, either. I thought he was going to do a proper trial but he just seemed to vanish.
The treatment involved taking cold baths at 16 deg Celsius lasting for 20 mins (?). He advised starting at 23 deg on Day One and gradually dropping the bath's temperature by a degree per day (?) until reaching 16 deg. His full protocol was published, encouraging people to try it - I bet a lot of UK patients had a go.
[Edit: my memory on this was wrong, now that I've read the media coverage (link below) - the adapatation process actually took several weeks, with probably at least a week at each temperature before moving down a degree.]
At the time, I had been confined to bed for several years and only able to leave it for a total of maybe an hour a day, including trips to the bathroom. I had then (and have now) acute viral-onset ICC/CCC ME.
The short-term results were spectacular. I improved considerably and within (if memory serves) a few days of hitting 16 degrees, I was able to go for a long walk - a mile? A couple of miles? - outside the home. This held up for a week or so until I caught some new infection (or possibly the originating infection reactivated because I pushed it, who knows) and I was back where I started.
I kept up the cold baths for 18 more months because, unpleasant (I'm not kidding) as they were, I was desperate. They had absolutely no further effect.
What was your rationale for mentioning ice baths, Sherlock? At the time I thought the idea was that it was something to do with adrenaline but I could easily be misremembering this - it's so long ago.
By the way, I imagine there are risks to ice baths, if anyone is thinking of trying them! Like a massive heart attack!
I used to play a particular music tape to keep my mind off the pain. If I hear the first song from that tape on the radio these days, it takes me in my mind straight back to that bath.
And not in a good way. Ow!
