A MASK, A SAUNA, AND OTHER CFS PARAPHERNALIA

I often wonder what someone looking in the window of my bedroom would think if they watched for any length of time. And no, that's not some kind of kinky invitation to voyeurs, I'm talking more about the various treatments for my CFS that I have tried, and that may look a little unusual if seen from outside.

When I am at home, I spend most of my time in my room. The house I live in is in a housing estate with different streets backing on to one another and so, even though my room is at the back of the house, it is still facing the backs of other houses. The other houses are all in a row so there are probably four or five houses where their occupants could potentially see through my window and into the room, if the curtains are open.

In truth, even the windows nearest to me are about forty metres away, so for a good view a person would need binoculars or really good eyesight. Still, with the light on, at night, with the curtains open, a good view could be had of the goings on in my room.

I really like the orientation of my room, facing, as it does, to the south. If there is any sun at all it will come directly in through my window, and because the house is well insulated, the room will stay warm most of the day, even in November. I also really need brightness and sunlight, and really hate these short dark days of winter, so I tend to keep the curtains open as late as possible.

Anyway, I'm sure that there isn't anyone looking in, but if they did, they would see some unusual things. Last year I had treatment with the Perrin technique, and that involved a lot of self-massage. I had to put olive oil on my chest, neck and back, and massage the skin upwards towards the collar bone.

The trickiest part of course, was doing the back. On the Perrin website they actually sell implements for massaging the back, but I decided to improvise, and rigged up a large flat duster that had a handle, elastic-banded a smooth plastic bag to it and turned it into a back massager. I could reach right down to the base of my back with it, and sweep upwards towards the neck.

Usually when doing it I closed the curtains, but I had to do it three times a day, and so couldn't always be bothered. I can imagine that from outside it must have looked like some kind of bizarre ritual of self-punishment, flagellation with a red duster, maybe something kinky!

Then, three months ago I bought a Far Infra Red sauna. There were a number available, but I got the cocoon model, which is basically something that looks like a flat, sliver sleeping bag that you attach to an electrical control box. I am in here every second day now, all wrapped up in my alien-looking cocoon, with wires coming out of it, looking - to anyone who happened to have a handy telescope at their back window - for all the world like some kind of Frankenstein contraption, or an extra-terrestrial examination chamber!

And then there is The Mask. I have written about The Mask (the name itself suggesting some kind of horror movie) before, here. I was given it by the Breakspear clinic, and told to wear it for four hours a day, as a way of getting the levels of carbon dioxide in my blood up.

 

So now I mainly wear it in bed, but occasionally I have worn it during the day. It looks like something that the guys in Breaking Bad wear when cooking crystal meth, or like a gas mask they might have worn in London during the Blitz.

Once or twice I have had to go to the bathroom while wearing it, and couldn't be bothered to take it off, and so have ventured out to the landing and the bathroom, hoping not to bump into one of my housemates, and then have to explain everything. Once I even had to get up at night to go to the toilet, with the mask on and, though I didn't see anyone, I could only imagine the reaction of one of the people I live with if they had bumped into me coming out of my bedroom, looking like Walter White coming from his meth lab.

On many occasions I would have been visible for anyone across the gardens and in one of the upstairs rooms in the houses that back on to ours. It does make me smile to think of someone looking in and seeing me sitting in my armchair, breathing like Darth Vader through this big hunk of plastic, and wondering what the hell I was doing.

In general things have settled down a little, after my severe relapse, and then slow recovery. The mask, though it helped me to pick up in the worst days of my crash, doesn't seem to be helping much now. I am persevering, and hoping for the best.

I have stabilised though, and am a little closer to my old self, though still about ten percent down on my pre-crash levels. I have found that using the mask a lot during the day makes me sleepy, and so I am concentrating on using it more at night in bed. All of the measures that I mentioned above: the Perrin technique last year; the far infra-red sauna; the rebreathing mask; all of the money and effort and time that I have poured into these attempts at recovery, have resulted, so far, in precisely nothing. Zero, zilch, no progress at all. In fact, if anything, I am a little worse than I was twelve or eighteen months ago. It is necessary to keep going, but sometimes it really does feel like bashing your head against a brick wall. 

THE PERRIN TECHNIQUE (CTND).

I saw Raymond Perrin last August. I was into about week nine of a proposed twelve week course of treatment, and nothing had shifted, I had had no real reaction.

Raymond Perrin is a doctor, though his doctorate is in osteopathy, not medicine. He has worked in the area of ME for a couple of decades, I think, and has developed his technique over that time based on research that he has carried out.

We got off to a rocky start when he repeated the questionnaire that the therapist had done with me in my first visit. I was told to answer without thinking to a list of symptoms he read out, giving each one a grade from one to five. I really spent almost no thought on answering, though he seemed to take it seriously, and told me that I had actually slightly improved, according to his questionnaire.

The truth was that I hadn't improved at all, and I knew that. I didn't need his totally unscientific list of questions to tell me how I was feeling.

The next thing that he did was to check that I was doing the home exercises properly. It turned out that I was rushing some of them, and was also not doing the head and neck massage often enough. My therapist had told me to do them once a day, Perrin said that I needed to do them three times daily.

I sensed a certain amount of impatience from him. There was an element of blaming the patient for the failure of the therapy, as if it were my fault that I wasn't feeling any better. I had just driven two hours to see the man, and was not in the best of moods.

It didn't improve our relationship very much when I told him that I hadn't bought his book. I was advised to do this at the beginning of my treatment, and I purposely didn't do so. My reasoning was, I'm already paying a lot of money for weekly treatment, if that doesn't help me, reading his book isn't going to make any difference.

He went on to do the same treatment that my own therapist had been doing, as well as some manipulation of the back, which he said was very stiff. He gave me an extra exercise to do, that of alternating hot and cold compresses on the small of the back, which was supposed to loosen up my back and so encourage drainage.

In fairness, I did find him eager to help, and he did give me his card with a personal email address to get in touch if I had any questions.

I went away and increased the frequency of the home exercises. It began to take up a lot of my day, all of this home treatment. I continued with the weekly sessions with my therapist, all the time waiting for a change, an improvement, even a worsening, anything. And nothing happened, and continued to happen.

I gave it fourteen weeks. Originally I was told that I should begin to see some change by week twelve, but I wanted to be absolutely sure. I was disappointed, but at that stage not surprised. Really by a few weeks in to the treatment I had an idea that this was not going to do anything for me.

My experience, however, is not shared by everyone. Dr Perrin himself claimed that 80% of people he treats experience some kind of improvement. I have looked for some substantiation for these claims, and actually more objective studies give a figure of about 50% of people who get some benefit from the technique.

That in itself makes it worth a try, if you can afford it. It probably cost me, including the cost of travel, over €1000. I was hopeful at the beginning of at least some small improvement, and so the long slow realisation that I wasn't going to get anything from it was tough to take.

Yet I don't regret giving it a go. It is one more thing I can tick off the list. And it apparently does help some people. Unfortunately, I was one of the unlucky ones.

(For more on this, check out the first post, The Perrin Technique)

THE PERRIN TECHNIQUE

In recent times I have found myself working as much as I can manage from September to June, saving some money, and then trying out some therapy or other during the summer.

Last summer it was the Perrin technique. This was developed by Raymond Perrin, a doctor of osteopathy in England. It has a number of elements to it, but the main one is a kind of targeted massage to clear the lymph ducts and so aid detoxification. Perrin's belief is that CFS is caused by blockages in the lymph ducts, which are the body's way of eliminating toxins, viruses and waste.

The liquid that carries all of these toxins away is called lymph. In Perrin's view, in ME/CFS, because of a trauma or stressor on the central nervous system the lymph ducts get blocked and the lymph no longer carries toxins away from the body and into the liver. Instead these toxins are pushed back up and towards the brain where they cause many of the symptoms experienced by sufferers of CFS.

I found a therapist that used the Perrin technique in Ireland and made an appointment to see him last June. He explained that the treatment would involve weekly visits for at least 12 weeks, and thereafter fortnightly and finally monthly. He also suggested that I would be substantially recovered from my symptoms in twelve to eighteen months, and was confident that he could help me.

There was an initial appointment to assess my condition. One part was to answer a long list of questions about my symptoms and their severity, trying to grade them and to quantify my condition. This questionnaire I found mostly pointless, I was asked about 40 different questions and told to answer without thinking, rating each symptom on a scale of 1 to 5, depending on how it applied to me.

The symptoms ranged from "dry mouth" to "frequent urination" to "muscle pain." A lot didn't really apply to me, or else only vaguely, and also there was no mention of certain problems that I do have, like food intolerances. My answers were totalled and then used to offer me a grade as to how severely I was effected. I was given a 6 out of 10 and told that the idea was to get me up to 9 or 10 out of 10. Frankly I found the assessment procedure to be a kind of weak attempt to give some kind of scientific credence to the process, while not being at all scientific.

Anyhow, I began my weekly appointments. This was tough as I had to do a two hundred mile round trip in the car every week to see the Perrin therapist for half an hour. This was a major investment of time and energy for me. The first appointment cost €150, and thereafter it was €50 a time, plus the €40 or so it cost for petrol.

Each session consisted of the specific lymphatic drainage massage, which was mainly on the chest and back, massaging upwards towards the clavicle, where the lymph is supposed to drain away. There was also some cranio-sacral massage, which worked on specific points on the head, the idea being to aid drainage from the brain.

I was also given a set of daily exercises to do at home, basically reproducing what was done in each treatment session, with a few extras. I did these religiously every day, and didn't miss a week of the treatment, despite the distance I had to travel.

My therapist was friendly and helpful, though he did seem very anxious to make sure I knew how effective the treatment had been shown to be. To be honest he protested too much, it became a bit tiresome every time hearing about this breakthrough with a certain patient (he never named his patients to me, I stress), or hearing about whatever new research was being done which showed how well the treatment worked. It smacked a little of desperation.

Still, I kept it up. I was told that I may feel a lot worse at the beginning, as the toxins left my system, but in truth I had no real reaction. I felt neither better nor worse. This went on for seven or eight weeks. No reaction, no change, no improvement.

Around week eight or nine, I was told that the man himself, Raymond Perrin, the originator of the technique, was coming to Ireland to give a talk and would be seeing patients. I booked an appointment with him. I was hoping he would have some ideas to get some change happening. At that stage I still held out some hope for improvement, but it was fading fast
(For the continuation, check out the following blog post here. )