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)
Thanks for posting this. I had considered giving it a try. I read a local newspaper article about a girl who got the improvement to 9/10. Your experience was what I imagined - a lot of money and energy expended and no improvement.
ReplyDeleteThanks for your comment, WigTastic. I must stress that this was only my experience, others have undoubtedly been helped with the Perrin Technique. I suppose the only way to find out is to try it, though it does involve a significant investment of money, time and energy.
ReplyDeleteI suppose I just wanted to insure that people go in to this with their eyes open.
Hi there, I’m one of the Irish Perrin success stories you mentioned in your blog post. I ran myself into the ground training for the 2011 Dublin marathon and have been suffering from Chronic Fatigue since. I have gone from struggling to cope with daily tasks to running again (all be it at a lower level)
ReplyDeleteI feel the need to explain the assessment sheets, when one starts treatment they find that most of their scores are to the right of the page, as they progress through treatment they see the scores move to the left as they improve. This is not to give the appearance of a scientific background as stated, one simply cannot recall precisely how one felt 3 months previously, this demonstrates how much one has improved and mid treatment I didn’t feel that I had, but looking at my sheets completed without any input from a third party I could see that I was on my way and it was only a matter of time.
I’m sorry it didn’t work out for you but reading between the lines I suspect you didn’t fully commit to your self massage, ‘It began to take up a lot of my day, all of this home treatment. ‘ Each session of self massage takes about 5 mins with a few extra minutes to be added when the back massage is done once a day by your helper. The icing can be done in front of the tv etc.
I suppose overall I find your assessment quite negative and cynical even with the caveat that this was just your experience, I would worry that someone else would be put off that could be helped with the fear of the expense involved, it’s not the practitioner’s fault that you live so far away from his clinic nor is it his fault that you drive a petrol car and not a more cost effective diesel model.
Here is a blog I have been following for some time from another patient based in the UK, I’ve never met her not had any contact with her but she reports weekly on her progress through treatment. http://cfsrecovery.blogspot.ie/
Good luck with your recovery and take care.
First of all, thanks for the link to the blog, I'm always interested in finding new opportunities for following people's progress.
DeleteI do, though, have to take issue with a number of things you said in your comment.
Firstly, my criticism of the questionnaire is based on the fact that you have to answer in a split second without thinking, and that using this to gauge changes in health is very very inadequate. In my case it was useless.
Also, there was a very clear attempt to convince me that, after 14 weeks of treatment, I had improved, based on the answers to the questionnaire and a physical examination. The truth was that I hadn't, and I knew I hadn't. I always know exactly how I am doing at any period of time, and definitely notice any improvement or worsening. And nothing had changed, despite the therapist's assurances or what the questionnaire said.
Lastly, the idea that I "didn't fully commit" to my self-massage is laughable. How do you know this? By "reading between the lines"? Which lines are you reading between? The reason I got tired of it (though I kept it up religiously) was that it was taking about 40/50 minutes a day for me to complete all of the various home treatments. If anything I was doing them too thoroughly.
I am glad that you have got some benefit from the Perrin technique, and if you actually read the post carefully you will see that I both mentioned that some people are helped by it, and also said that my experiences are not necessarily universal. What you seem to be incapable of accepting, though, is that not everyone is going to have the same benefit from the treatment as you had, and the idea that I was somehow responsible for the failure of Perrin in my case because I didn't "fully commit" to the home treatment is proof of this.
In general, I am mystified that you would think it a good idea to come on to my blog and tell me - someone you have never met - that it was my lack of commitment to a treatment that I devoted four months of my life to, that was responsible for its failure.
I’m delighted to share the link, I look forward to her tiny triumphs every week.
DeleteI’m sorry if I gave you the impression I was blaming you for Perrin not being successful, I wasn’t, if you truly feel that you engaged with the treatment and stuck to it religiously then who am I to argue with that. I have heard of people with other underlying issues not having success (mercury fillings etc) but once these were dealt with the treatment program proved fruitful. With regard to the assessment sheets, I was never told to answer on the spot, in fact the direction I was given was to think carefully about how exactly I had felt in the previous week and to give as accurate a response as possible.
I stand over my comment regarding the impression your blog post creates, your caveat does little to remove the bias towards avoiding The Perrin Treatment and I fear that anyone on the fence regarding treatment would be turned away from something which has the very real potential to help.
Good luck with your recovery.
I don't really understand your idea of "bias". I don't have a bias, I simply wrote about my experiences. That's all, I wrote about what happened to me, and about my perspective on those experiences. It's not biased to say that it didn't work for me, and it's not biased to point out a number of things that I objected to or found inadequate. This is what happened, these are the facts.
DeleteAlso the point about "other underlying issues" is also puzzling. This is what Perrin claims to treat, these "underlying issues". If it doesn't, what use is it? Of course if "underlying issues" are treated, then someone is going to feel better, with or without Perrin.
I still feel you are being very naive about the Perrin treatment, seeing it as the panacea for CFS, just because you yourself achieved some benefit from it. You still don't seem to be able to accept that a good chunk of the people who have the treatment do not gain any improvement from it, no matter how committed they are to it. People with CFS need to hear their stories, and my story, as much as about the successes, to be able to make an informed decision. CFS sufferers need information and facts, not propaganda.
Please could you advise where I can find out more re the technique and the massarge please marymccarthy@blueyonder.co.uk
DeleteYour original article describes ‘your’ experience in a cynical manner, that to me, shows bias.
ReplyDelete‘Underlying Issues’ can be the cause of the build up of toxins in the system, remove them and you’re still left with a malfunctioning system with a backlog, that is my understanding.
I’m not naïve in the slightest, I never said that it was the answer to all sufferers, my purpose for commenting here was to demonstrate that contrary to your line ‘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)’ that those breakthrough patients exist and in answer to CFS patients needing facts and figures, I disagree, they need hope and being told that someone just a little further down the road in treatment from you is improving breeds positivity which in itself is beneficial.
I’ll finish with this, last year I went to The Willow’s Clinic suffering from fatigue, mild depression, weakness, toxicity, brain fog, sore throat and more, I couldn’t function properly in any aspect of my life, one year on, I’m running one business while in the process of starting another, I’m in a very positively charged place, I’ve completed a Higher Diploma in DCU, I’ve started running again and covered 20 ‘easy’ miles this week at an average pace of 9 mins per mile, every aspect of my life has improved, Perrin may not help everyone, but hope doesn’t hurt.
Again, I wish you a speedy recovery.
Yeah, you're really not getting it, and it's clear that you're so wrapped up in your own particular experience at this stage, so incapable of imagining that someone could have a different experience of Perrin to you, that you're probably not capable of getting it.
DeleteTo make it clearer, I am researching a number of treatments at the moment. I am looking for testimonials from people who have had the treatments, what worked, what didn't, the positive and the negative, so I have enough information to make up my own mind as to whether I should try them or not. Everything costs money, and it is important to try and use whatever little money we have in the most efficient manner possible, on therapies that might work for us.
What I definitely do not want, is some cheerleader for a particular therapy looking through rose-tinted glasses at the issue, telling me how great it is, not mentioning any of the drawbacks, not mentioning the fact that a good proportion of the people that try it get no benefit from it at all. This is doing me a disservice, and patronising me, and depriving me of the chance to evaluate the therapies accurately.
When you say that people with CFS don't need "facts and figures," you are talking nonsense. That is exactly what we need. We need to hear the success stories, like yours, and the failures, like mine. This idea that hearing about other people's success stories breeds "positivity", and that this "positivity" will somehow magically result in improvement is also vague, new-age nonsense. We need the truth and not the rose-tinted propaganda that you would have me write.
To sum up, if anyone is displaying a bias here, it is clearly you. You seem to think that because the Perrin technique helped you, then it must be promoted for everyone with CFS. You still seem unwilling or incapable of dealing with the fact that many people pay a lot of money for this course of treatment and get no benefits.
It's clear that you are incapable of looking at it objectively, and are uncomfortable dealing with experiences and opinions that are different to your own. You clearly want your perspective to be the only valid one, and to discredit another contrary opinion you raise this nonsensical charge of "bias" against it. If you do not want to accept the reality of my experience, that is not my problem.
I've discussed my experience, that's all and I've wished you well on your recovery. Saying that being positive is new age nonsense is just sad. I'm not wasting another second on this.
DeleteIt 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 ... ineckmassager.blogspot.com
ReplyDeleteI have just started the Perrin Technique at the Perrin clinic in London and found the questionnaire a waste of time and first appointment quite rushed. Apparently i present as a 7/10 with 10 being the best but am actually a 3/10. I'm not convinced, i know how i feel but the thing that has really annoyed me is the fact that had i not brought up massage in conversation, the therapist wouldn't have mentioned that any other massage should be avoided, same for any other detox methods such as epsom salt baths. I have the book which I don't recall mentioning this either and the way I have been shown to do some of the exercises is different from how the book describes they should be done and when i mentioned this i was just told the book was wrong. So far i have found the whole experience very unprofessional. The last time Dr Perrin was there but told me my therapist wasn't, she was but running late. I also wasn't told that she only works Friday's and Sunday's (despite initially seeing me on a Thursday) and I could tell she was a bit annoyed that I couldn't make my last appointment because there was nobody to take me because i don't drive and it's a very awkward place for me to get to without a car and I also won't be able to make my next appointment for the same reason. Personally I have recovered before simply by listening to my body, resting, pacing myself, not feeling guilty when I couldn't do things and was already much better than 3-4 months ago before i went, when I was sleeping most of the day and for every good day i had 4-5 bad, now for every bad day I have 3-4 good so in my case i am not convinced the Perrin technique is what i need but i thought it was worth a try when someone mentioned it to me.
ReplyDeleteHello TheChronicSituation,
ReplyDeleteI read with interest your blog and afterwards most of your conversation with Conor O'Brian.
This is orcourse your blog, but i have to agree with Conner that your blog post was very negative from the start, and thereby biased.
Saying that the questionnaire was pointless is bizarre because it is not meant for you, it is for the Osteopath!
But the negativity is yours and this is your blog so it is what it is.
Out of interest, did you receive an M.E diagnosis via NHS also?
My wife (who is house-bound & mostly bed-bound) had an initial appointment in January 2018 with Dr Perrin himself which lasted 2.5hrs where he diagnosed her with M.E with a score of 2.5. This time included an in-depth 'education' lesson about his research, methods & reasoning behind the technique, which my wife fell asleep for but which i took notes. The diagnosis was confirmed a week later at an NHS Immunopathology Clinic, where Fibromyalgia was also added into the mix.
The point about reading the book i imagine was that you didn't have the education bit, but that for you to be aware of all the research & resoning plus understanding all the excercises etc. The book would have informed you about the hot & cold compresses.
It's occured to me that you may not have been seen by a proper Perrin Technique person: there's nobody currently on the map in Ireland so perhaps you've suffered from not having everything done properly?
http://theperrintechnique.com/practitioners/
Given the appaling state of the NHS treatment offer (ie CBT/GET vs P.A.C.E trial etc) we thought we'd give it a go, with an Osteopath based near Winchester, a 1hr drive from home.
We were told to not expect any improvement for the first 3 months, but actually positive signs (of feeling worse due to the drainage beginning to work) after the first couple of appointments. We were also advised it would be 3 years before my wife could get as much out of the technique as possible.
6 months later, after start/stop sessions due to other health conditions, the progress continues. Yes it is expensive, for us about £100 per week all-in (therapy session, petrol, supplements etc) but will continue.
I'm sorry it sounds like you had a bad therapist and overall experience & hopefully you found some other solution?
The ME Association do not support Dr Perrin but i don't think it'll be too long before they have to admit some support even if just for the diagnosis technique he has developed. I believe the ME Association are part funded by organisations that wish to develop a 'simple' blood test or medication for M.E and so a manual therapy technique is not in their interest.
Anyway, good luck to you in whatever process you're now following.
Regards,
Graham
First of all, the charge of "bias" is nonsense. I am simply recounting my experiences and impressions. Would you like me to lie? I am not required to put a positive spin on a therapy that did nothing for me, and which cost me a lot of money.
DeleteI am glad your wife received some kind of help from this, but you seem to be saying the same thing as Conor; I am not allowed to give this therapy a bad review because it does not agree with your experience. And I repeat what I said to him; people with ME need information, not propaganda. They need all perspectives, not just the positive.
Also, any therapy that requires you to keep visiting for THREE YEARS to get full benefits immediately sets off alarm bells. Three years?! Of course it is in their interest to get you to keep coming for this length of time - that's €10,000 or £10.000 over that time.
This kind of practice needs to be questioned, especially when a lot of people don't benefit from the Perrin technique and yet spend huge amounts of money on it.
Thanks for the information. I'm considering trying this out for CFS, & it's good to know both the possible positive and possible negative outcomes that could be. At least, if it doesn't help my CFS, seeing an osteopath will probably help my back problems, so worst case scenario it won't likely be a total waste, lol.
ReplyDeleteI found your posts about your experience with the Perrin technique to be honest and factual. I could only read part of Conor's responses, I'm still shaking my head.
ReplyDeleteThroughout your posts, you've said that others should try it, so I see no bias, quite the opposite. Maybe the people who have benefited from the technique, didn't really have CFS or M.E?
I'm glad that there are people like you, who share their experiences. We know there are many charlatans out there trying to make big bucks from CFS/M.E. sufferers, so thank you for your review.
I won't be buying into the Perrin technique, I've already spent too much money on things that are supposed to help me, and all they do is worsen my illnesses and my bank balance.
As for Conor saying you didn't fully commit...����
I've been doing Perrin for 12 weeks and I'm now back where I was when I started, if not slightly worse at present. I'm persevering for another 6 weeks but then after that I'll be dialling it back or cancelling. At £195 per month it isn't exactly cheap. Although I had reasonable hopes it would work, I am still not convinced that I am not suffering with an entereoviral infection either Coxsackie B or EV71. Both of these cause identical symptoms to ME and once the virus has bedded in, it will live out in the tissues and won't appear very easily on blood tests. The only way to truly test for it is to perform a stomach biopsy (See Dr Chia's work). Dr Chia also says how entereoviral infections are made infinitely worse with exercise, this was proven in mice models. The mice were infected with the virus and the virus multiplied rapidly on exertion causing even further and more debilitating fatigue. I also personally think that homeostasis is a thing for all ME sufferers. Once the body gets into a set routine we can often feel better, but as soon as the slightest change occurs it can be enough to throw us off balance quickly.
ReplyDeleteEven though this won't account for the reason why everyone is sick, I do feel like it may be what is going on with me. Also Dr Ron Davis has proved that many with ME are struggling with an energy deficiency in the cells themselves and is looking he hopes at immunological based FDA approved drugs to get people living a semi normal life. Which has to be good news for everyone. Whilst I think everyone should give Perrin a go for at least 6-12 weeks, after that point I am skeptical that it is worth continuing with if no real improvement has been seen.