Perrin/lymph drainage/massage: makes sense or not?

[Sasha]

I've come across a few posts on the Perrin Technique lately and in the ME Association's survey, 115 PWC had tried the technique and 51% considered it to have improved their symptoms (14% "greatly improved" and 37% "improved").

It's a technique developed by an osteopath that involves light massage and exercises to improve lymph drainage. The technique's originator (a PhD, not a medical doctor) has treated a lot of ME/CFS patients and on his Perrin Clinic website says:

"We at the Perrin Clinic believe that Chronic Fatigue Syndrome/Myalgic Encephalitis and Post Viral Fatigue Syndrome is a physical disorder that leads to a build up of toxins within the brain and the spine. The Perrin Technique™ has been developed to diagnose CFS/ME by identifying definite physical signs and to treat the disorder by improving drainage of these poisons from the central nervous system. [...]

"Raymond Perrin's research at the University of Salford in conjunction with the University of Manchester has provided strong evidence that an important component of CFS/ME involves a disturbance of lymphatic drainage of the brain and muscles. The novel osteopathic treatment developed by Raymond Perrin has been statistically validated in both clinical trials, emphasising the need to focus future research on the biomechanical aspects of this disorder. Raymond has expanded our knowledge of CFS/ME, which led to a doctorate awarded by the University of Salford."​

I must admit that when a practitioner starts talking about "toxins" and "poisons" it sounds vague and alarmist to me; I'd rather they specify what they mean, although in a video on the site it appears that the "toxins" he's talking about are specific immune products (macrophages and stuff, I think - I'm no biologist). And he is talking about a different method of diagnosing ME/CFS than, say, the Canadian Consensus or other criteria, based on physical signs and symptoms including a flattened thoracic spine as you can see in his YouTube stuff (at 1:50 to 2:30 mins in this section). So I'm not sure whether he's really treating ME/CFS patients as we'd recognise them though it's possible that such patients are approaching him for treatment and he's just "confirming the diagnosis".

I've skim-read some of his stuff at this point and I hope I'm not misrepresenting him but for me he rings alarm bells in terms of the manner of his claims while on the other hand, I gather it makes sense to get your lymph system moving because it carries immune system "messengers" around the body and disposes of waste, but relies on the movement of your body to function (it doesn't have a pump like the blood system has the heart). So if you're not moving much, neither is your lymph.

So, a few questions. Pick any one(s) you like!

1. Anybody with a proper background in biomedical stuff have an opinion on whether the basic approach makes any sense?

2. That flattened spine thing: is that something that can develop in people with an illness, say, through long periods of being confined to bed? I hadn't heard that the spine could change shape in adults except through osteoporosis. If so, can it be changed back to normal? I'd be amazed if that were so but maybe I will be.

3. The above blurb mentions that he's done a couple of clinical trials (I think they might have formed part of his PhD). Does anyone know where there's a summary? I'm interested in their design quality, his results, and how he is defining ME/CFS.

4. Some of the exercises in the video on his site (shoulder rolls, marching on the spot, twisting from side to side) are identical to some I've just been given by a physio to sort my back out. Is it possible that his techniques help people with pain symptoms but for different reasons than he thinks?

Please feel free to add other questions of your own or comments on the Perrin technique or lymph massage/drainage generally!

 

[IntuneJune]

Sasha, I am going to go look at the lnks you provided, but wanted to say in the past, I received manual lymphatic drainage. As I do not know what improvements he studies, I am not sure about the brain and spine connection. Will take a look.

The drainage did help with my lower extremities, although the drainage included full body.

I might not have been aware enough of other changes taking place.

June

 

[Sasha]

Hi June - he seems to be talking about overall improvement in your overall health, including fatigue. His website video shows previously very disabled people riding about on bikes and returned to pretty much normal. He believes that he is getting at a fundamental issue in CFS - if not the cause, certainly something that contributes very heavily to the whole syndrome.

Maybe I am confusing the issue by saying that his technique is the same thing as lymphatic drainage. His technique seems to involve some gentle spinal and osteopathic manipulation and possibly some quite specific areas of the body for lymph massage. Sorry I'm not clearer, there's not a lot of detail to go on on his website. He has a book that apparently gives the detail.

Actually, it's interesting to read the various comments there on Amazon about the book. It includes one person treated by Perrin himself for two years with zero improvement and in contrast, others who have done very well. I'd be curious to know how many treatments practitioners consider to be a fair trial; generally, if I'm not getting any benefit from a physical therapy after six sessions I reckon it's not going to do anything for me long-term either.

 

[IntuneJune]

Lymphatic drainage

I watched his video.... interesting about the chest, my spine has a lot of abnormalties and one of them is a decrease in the normal curvature..... but I remember it being the lumbar spine,and that is where I have pain, and because of this abnormality the vertebrae are now crushed a bit. At some time, I will dig out old x-rays to see if there is mention of the thoracic spine.

Also, there was a video on lymphatic drainage I watched and my manual drainage was similiar, in the direction of the "massaging motion" and while not close to feeling as though I was receiving a massage, it there more motion by the therapist moving upwards or downwards towards the drainage areas.

Interesting, he mentioned stretching... and manipulation of the spine, at some point.

I have repeatedly mentioned myofascial release as being one of my best tools in helping with the pain and stiffness. MFR is not a massage, but I can see how it may help loosening tight areas allowing the lymphatic system to drain better, and also the two PTs used to manipulate my spine, NOT like a chiropractor, but I felt they were working to extremes, twisting and pulling, working together-pulling me in opposite directions.

When they were done, I felt a spiraling down my spine. John Barnes, a MFR guru, called this unwinding. Interesting if it had anything to do with the lymphatic system. I don't know the configuration of the lymphatic system around or in the spine

Well, you have peaked my interest and interestingly, I had made a committment to get back to use the rebounder a few minutes a day, and then invert (I have an inversion table). My lymphatic drainage therapist said I was helping myself a lot because of the amount of time I spent in the pool.

I did feel my best when I was doing MFR, lymphatic drainage and pool. Right now, it is just the pool as those other modalities unfortunately cost quite a bit.

Will keep tabs on this thread and after I read more, (I don't have time right now) will pop back in.

Thanks for bringing this up.

Fondly June

 

[IntuneJune]

Sasha, I had not realized you responded to my first post. Again, I have to leave.....here...... but will get back. I feel these my lymphatic drainage sessions and MFR are very similiar to what he is saying.....

I did improve a great deal first with MFR, did not have lymphatic drainage until later. However, I did not have the swelling before either.

June

 

[Sasha]

Peek inside "The Perrin Technique"

I've just looked on the US Amazon site and found that on there, unlike UK Amazon, you can peek inside the book. Here it is.

Don't forget that if you want to buy the book from Amazon, you can donate to MERUK this way if buying from UK Amazon (see my signature) or to Phoenix Rising if buying from either US or UK Amazon - they give a cut.

 

[Sasha]

Hi June - it sounds as though there are similarities with the treatment you've had and the Perrin Technique, at least broadly. I'm glad it helped you.

I'm curious about all this now!

 

[maryb]

Sasha I had treatment on and off from Raymond Perrin over the period of a couple of years - the first time co-incided with a 90% recovery. I was also on Myhill's supplements, but also not as ill as I became after a relapse theree months later.
I usually felt worse after the first session but then steadily imroved to a better functioning level, never recovered majorally again though -the lymph massage definitely works to get things moving, if you were already on an upward spiral I reckon it might help lead to a recovery.
He is a very kind sincere man, genuinely cares about his patients and will bend over backwards to help with problems in general. Not many of those about.
The major problem is cost - about 60 a session - and you are supposed to have someone do the back massage daily for you inbetween sessions.
If you could find a physio near you who understands the technique it would be cheaper obviously.

 

[Sasha]

Hi Mary - thanks for replying, that's very interesting to hear from someone actually treated by Raymond Perrin himself. That's fantastic that you had such a strong improvement - how long did that take from when you started the treatment? I'm really sorry that you then relapsed to such an extent.

I hadn't realised that you would need someone to do a daily back massage. I don't have anyone who could do that - I'd have to pay. I could afford a weekly session with a Perrin practioner and maybe a few weeks even of daily massage on top of that as long as it was fairly cheap but it would be a heck of a long-term expense. I suppose the hope is that after a while you start to improve and need less frequent treatment?

I'm glad to hear he is such a nice man!

 

[maryb]

It was about 3 months - It was fantastic when I think back - to get up and feel well -like before you became ill - it started with just a day and then became every day - unfortunately I took it for granted and rushed headlong back into a whirling lifestyle as before - enjoyed the 3 months of wellness whilst it lasted though
You can easily do the chest massage yourself once you have been shown, I suppose the ideal would be to have weekly sessions for about 5/6 weeks if you can afford it and then go to fornightly /monthly etc. Thats what he recommends.
What I find interesting is if you are in the shower and you do the neck massage - with soapy hands gently stroking down from behind the ears towards your collar bone you can feel your sinuses draining immediately. Also shoulder shrugs - something definitely moves. Our inactive lifestyle has a lot to do with letting the toxins just sit there making us feel worse.
I have a bad back at the moment so am going to go to see him again anyway quite soon.

 

[Sasha]

Interesting! I had several years of being about 95% well after years of being bedridden and am now four years into a serious relapse that has me pretty much housebound. I don't think I helped myself either by pushing it lifestyle-wise but then I read about someone else on PR with a similar pattern but having apparently relapsed for no reason. Really hard to know what does it.

I hope you get some more improvement when you go back!

 

[IntuneJune]

Ok, trying to get chores done around the house..... and that is a must, what a mess, but I keep thinking..... these are random thoughts.

I often wondered why some of us end up bedbound and others do not. And I live in fear I will be a bedbounder as occasionally I go through periods where there is absolutely zero energy to draw on to move, requiring sitting or laying down on the spot. I mean right there!!! Where ever I am. This is why I never doubted those who were bedbound.

Well at the very beginning of all of this, a rheumatologist who diagnosed me, sent me to the pool, in a rather stern and frightening way, but I must say I followed her orders. Now, working out in the pool is known to be very beneficial for the lymphatic system.

So, if the root cause for all of this is a virus, XMRV or other mean bug, and our immune systems rose to the occasion or tried to fight it off over and over since it might be reactivated, and toxins were not carried away over time by the lymphatic system.......thus it became overwhelmed..... then that might explain the difference between those with XMRV positive without symptoms (their lymphatic system is working fine..... or maybe better said both immune and lymphatic systems are working fine) and those XMRV positive folks with pain and drop -in-your-track symptoms may have a plugged lymphatic system? Also XMRV negative folks could have other mean bugs causing the initial root problem and still plugging the lymphatic system.

And maybe that is why we are so sensitive to toxins we are exposed to and other folks are not, our lymphatic systems are overwhelmed and cannot handle any more toxins.

Oh, I don't know, it is SO DARN frustrating, there has to be an answer somewhere.

Just thinking outloud. OK, have got to get back to work here, but I did rebound for five minutes and hand for 10. No pool today.

June

 

[maryb]

June I think you've just about summed up Perrin's theory without knowing it well done Now on with those chores!!

 

[IntuneJune]

Ha! Thanks Mary.... Thirty years ago, my arms developed ugly little lumpy soft bumps requiring my never going sleeveless again, and at that time I was very thin. Now I have many many many more soft lumps on my arms and my legs have swelling with what I refer to as "puddles." The doctors squeeze my ankles and state it is not pitting edema, therefore, nothing to worry about.

So over the years, I perceive my lymphatic systeem getting worse. I don't remember a smoothing of the skin with the MFR, but that helped the pain and stiffness, the lymphatic drainage did soften the skin some.

The PCP who ordered lymphatic drainage about three years ago now has retired. The new guy does not see any problem. "Do you know how many patients who come through my door complain of swollen ankles?" He has been good about somethings so have yet to make another change. This is different from ankle swelling. The the puddling is lower and upper leg. Not just the ankles.

How wonderful this doctor is such a humanitarian, he came across that way in the video.

I stopped for lunch, time to return to the drugery.

Fondly, June

 

[maryb]

Me too - puddling in my lower legs not just ankles - why can only some docs see the difference?

 

[IntuneJune]

Wow!! Yes, I have small flat puddles here and here on my legs upper and lower and now, what used to be puddles around the knee cap, slight mounds!!! These are above and below the knee caps. One of my specialists, not his field, when I showed him said "oh, you have developed some bursitis." I don't think so.

Humphf! So hard, so frustrating.

Fondly,

 

[Wayne]

Lymphatic Drainage

... I reckon it's not going to do anything for me long-term either.

... I reckon it might help lead to a recovery.

OMG, two people from the UK who use the word reckon! I had no idea reckon was part of the UK dialect. My brother lives in Arkansas, and I thought reckon was pretty much confined to the American South. Now I know better!

Regarding lymphatic drainage and massage. I have a "morning ritual" (about 20 minutes) of dry brush massaging, and massaging myself over various energy points of the body. Most vital seems to be the deep massaging I do along my spine on both sides. My Osteopathic doctor had some scientific explanations / words to describe some kind of lymphatic area along the spine and why my sinuses always clear while I'm doing these massages (called "spinal flush" by Donna Eden, author of the book "Energy Medicine").

Anyway, I do my morning ritual because it always seems to drain away lingering pain syndromes in my body that I usually wake up with. It also clears up my sinuses significantly as well. From what I can determine, I would think that perhaps some dry brush massage, rebounding, and various self-massage techniques might accomplish a lot of what professional services might be able to offer. Because of limited monies, that's usually the route I go.

I might just consider "upping" my lymphatic drainage regimen. I've long thought of getting a rebounder, though I've never tried one and don't know whether I could handle it, physically speaking. I should try to find a way to find out.

Good thread. Important concepts to consider.

Best, Wayne

 

[Sasha]

OMG, two people from the UK who use the word reckon!

I reckon we do!

I saw George post something yesterday that included "dag nabit" which I have only heard in American cartoons. What does that mean?!

 

[IntuneJune]

I reckon we do!

I saw George post something yesterday that included "dag nabit" which I have only heard in American cartoons. What does that mean?!

"Dag nabit" something like "gosh jingles" aka "Oh sh_____" If I am remembering this correctly.

June

 

[Sasha]

"gosh jingles"

Totally new one on me, that!

"Oh sh_____"

But there's one I recognise (reckonise?)...

Does "dag nabit" come from anything? Like "dog nab it" or... or...