Thoughts on the Perrin Technique?

[Guwop2]

My sister is a massage therapist and has suggested that I look into ther Perrin Technique. My experience with many treatments has been that some 'types' of ME/CFS respond to some treatments and others to others (i.e theres no uniform treatment - LDN for example messed my up for 6 months, whereas for others it has been ver succesful). Does anyone have a view on what ' type' of ME might respond to the Perrin Technique (if any..)?

 

[Mary]

Hi @Guwop2 - I'm afraid I don't know if there is any particular "type" of ME/CFS which responds to the Perrin technique. However, I am seriously looking into giving it a try. I'm working on finding a therapist who can do the technique, or is willing at least to learn. And I'm very fortunate in that my doctor (an osteopath) has given me a referral for this. I still have a couple of things I'm trying to get into place - I hope to have it covered by Medicare.

I think it's great you have a sister who is a massage therapist. Is she trained in the Perrin technique? If so, I'd try it in a heartbeat.

There's a facebook group called Perrin points (ME/CFS treatment) which may have some good information. It's a private group so they just have to approve your membership.

Here's a link with a self-help guide put together by Dr. Perrin: https://theperrintechnique.com/self...2aDidr_Cyu7BJcFpD1xBpPLXXD1I9lREM2tZRUdF5S4e4

And finally, there's a free ME/CFS clinic in Minnesota run by Dr. Ruby Tam. She's a Perrin practitioner. She used to work as a regular MD until an ME/CFS patient came to see her. She knew nothing about ME/CFS but decided to learn. It's incredible what she has done and what she is doing. Basically, as I understand it, she will do free phone consultations to work with other practitioners. Here's a link to her clinic: https://www.mecfsclinicmn.org/our-team

I emailed Dr. Tam with some questions and she replied very quickly, less than a day. We had a brief email exchange and she was very helpful and even called me at one point to clarify something. She was helping me in trying to sort out finding someone to treat me and also to get it covered by Medicare. Her website says the clinic helps patients in the following states: Minnesota, Iowa, Wisconsin, South Dakota, Alabama, Arizona, Kentucky, Louisiana, Ohio, Washington and Connecticut. However, I'm in Texas and it didn't make any difference.

btw, fwiw, I did not do well with ldn either. I tried it about 3 times, and always very low doses, but it did nothing for me except to make me spacey and tired. I have no idea what it does for other people.

 

[Rufous McKinney]

I have no idea what it does for other people.

I get major inflammatory symptoms in my mouth, tongue throat lips .

My teeth were being ejected from the pulp. every evening. I felt like a chipmunk: acute inflammation along a line affecting certain teeth. My dentist saw this. He considered it extremely bizarre.

LDN stopped that. It is far less likely to happen, and if I run out of LDN, after about two weeks, those really unpleasant symptoms return.

but is it inflammatory? I don't know. It could be an acute autonomic reaction, or mast cells or allergic type reactions (that is what the dentist thought it was)

I went to this doctor about this for several years. Just got stared at by the white coat.

The dentist was smarter than the doctor.

 

[Rufous McKinney]

Does anyone have a view on what ' type' of ME might respond to the Perrin Technique (if any..)?

I don't.

I had a whole problem with elbow bursitis. That was fascinating. After maybe almost two years of dealing with it, I "simply" did major stretches of my arms and upper body: and it finally cleared out (Mostly).

It was very strange this elbow thing. Its. considered a type of stagnation. My elbows cannot be anywhere near this laptop. It irritates the bursa.

 

[Byles]

I think @Cort mentions it several times on health rising

 

[Faith2007]

Does anyone have a view on what ' type' of ME might respond to the Perrin Technique (if any..)?

This article hypothesizes what the Perrin technique is trying to help with ME/CFS, but recommends the addition of EPA:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2991935/

I have discussed it online with somebody on The Mighty with ME/CFS that said it really helped her and she gave me this link, which actually shows how to do it by an osteopath:

I'm not well enough to try this by myself, and would have to try to hunt somebody down that knows how to do it or is willing to learn. But cash for extra treatments is short right now, so it's on the list of things to try.

 

[perchance dreamer]

Occasionally, I get twinges in my breasts, and lymphatic massage always gets rid of the twinges. I'm not sure if all lymphatic massage is Perrin or not.

 

[Guwop2]

This article hypothesizes what the Perrin technique is trying to help with ME/CFS, but recommends the addition of EPA:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2991935/

I have discussed it online with somebody on The Mighty with ME/CFS that said it really helped her and she gave me this link, which actually shows how to do it by an osteopath:

I'm not well enough to try this by myself, and would have to try to hunt somebody down that knows how to do it or is willing to learn. But cash for extra treatments is short right now, so it's on the list of things to try.

thanks for this article. I wonder whether PT poses a risk at all. I canot have massages for example (like a strong Thai massage), as I get bad PEM - perhaps 'toxins' are released, though I suppose a few things could be going on.

 

[Guwop2]

Hi @Guwop2 - I'm afraid I don't know if there is any particular "type" of ME/CFS which responds to the Perrin technique. However, I am seriously looking into giving it a try. I'm working on finding a therapist who can do the technique, or is willing at least to learn. And I'm very fortunate in that my doctor (an osteopath) has given me a referral for this. I still have a couple of things I'm trying to get into place - I hope to have it covered by Medicare.

I think it's great you have a sister who is a massage therapist. Is she trained in the Perrin technique? If so, I'd try it in a heartbeat.

There's a facebook group called Perrin points (ME/CFS treatment) which may have some good information. It's a private group so they just have to approve your membership.

Here's a link with a self-help guide put together by Dr. Perrin: https://theperrintechnique.com/self...2aDidr_Cyu7BJcFpD1xBpPLXXD1I9lREM2tZRUdF5S4e4

And finally, there's a free ME/CFS clinic in Minnesota run by Dr. Ruby Tam. She's a Perrin practitioner. She used to work as a regular MD until an ME/CFS patient came to see her. She knew nothing about ME/CFS but decided to learn. It's incredible what she has done and what she is doing. Basically, as I understand it, she will do free phone consultations to work with other practitioners. Here's a link to her clinic: https://www.mecfsclinicmn.org/our-team

I emailed Dr. Tam with some questions and she replied very quickly, less than a day. We had a brief email exchange and she was very helpful and even called me at one point to clarify something. She was helping me in trying to sort out finding someone to treat me and also to get it covered by Medicare. Her website says the clinic helps patients in the following states: Minnesota, Iowa, Wisconsin, South Dakota, Alabama, Arizona, Kentucky, Louisiana, Ohio, Washington and Connecticut. However, I'm in Texas and it didn't make any difference.

btw, fwiw, I did not do well with ldn either. I tried it about 3 times, and always very low doses, but it did nothing for me except to make me spacey and tired. I have no idea what it does for other people.

My sister doesn't practice Perrin, she just came accross it and suggested it to me. IM based in teh UK and there appears to be tons of practioners here in London (you can search them here: https://theperrintechnique.com/find-a-practitioner/). Not sure how to which are the wones to go for though.

 

[Faith2007]

thanks for this article. I wonder whether PT poses a risk at all. I canot have massages for example (like a strong Thai massage), as I get bad PEM - perhaps 'toxins' are released, though I suppose a few things could be going on.

This is a very good point. If you choose to try it, you could discuss just having a small portion of it performed because of the toxins that may be released, until you can do more. It's the same idea of going low dosage and slow whenever trying out a new supplement or medication.

 

[Guwop2]

This is a very good point. If you choose to try it, you could discuss just having a small portion of it performed because of the toxins that may be released, until you can do more. It's the same idea of going low dosage and slow whenever trying out a new supplement or medication.

totally. i will start extremely slow.

curious also about these 'toxins'. are they toxins?

 

[Mary]

My sister doesn't practice Perrin, she just came accross it and suggested it to me. IM based in teh UK and there appears to be tons of practioners here in London (you can search them here: https://theperrintechnique.com/find-a-practitioner/). Not sure how to which are the wones to go for though.

You're lucky - my closest trained practitioner is 3 hours away, too far for me. I'm trying to arrange for an OT therapist who takes insurance AND is willing to talk to a doctor a few thousand miles away to get instructions on how to do it! . . . .

curious also about these 'toxins'. are they toxins?

Yes, they are toxins. e.g., pesticides, various chemicals in our food and water, which get stored in our bodies, things we were never meant to ingest . . . . I've experienced detoxing - for me it generally makes me tired, upsets my stomach and digestion and also at times has made me very spacey and having trouble functioning (I'm guessing from mercury in my brain from fillings which have been removed). There seem to be endless supplies of various toxins in our modern world!

 

[Faith2007]

I canot have massages for example (like a strong Thai massage), as I get bad PEM - perhaps 'toxins' are released, though I suppose a few things could be going on

So I couldn't find any scientific or doctor written information on toxins. This may be debated.

But the Perrin technique only uses gentle massage. Deep massage is not recommended for ME/CFS patients. We have autoimmune conditions and pain. And I also read regular massage can improve the functioning of the immune system on Mayo Clinic. I know that anything that impacts my immune system can give me an adverse reaction at first, since it's dysfunctional.

I also pulled this website link from one of my CFS books, which discusses the Dr. Vodder Technique of Lymph Drainage: https://www.vodderschool.com/contacts/lymphedema-therapist
It has a search feature where you can look for a practitioner as well.

 

[crussher]

I haven't gone to a Perrin practitioner yet - I hope to in Bordeaux this summer.

But I have had eight osteopathic sessions this year so far and have explained to the osteopath about Dr. Perrin.

The osteopath looked at Perrin's book and confirmed that I have all the signs Perrin talks about in relation to ME (particularly pain, rigidity in thoracic region). He also said that my back was in general so bad that he would think I'd been in 3 car accidents and played rugby for 15 years!

That was back in January. I've responded very well to osteopathic treatment. The osteopath now says that all the car accidents and years of rugby are gone. The remaining problems are the rigidity in the thoracic region (but this is better) and that 'if everyone had a back like yours now, people would be basically okay'.

I love osteopathy. My spine is much more fluid and flexible, my neck is much more mobile. After each session, I usually feel woozy in the head as the lymph system is forced into action. That feeling wasn't so noticeable the last few times. After my first four-five sessions, the reactions were much stronger - noise, light sensitivity, needed to rest a lot, wooziness in the head.

It's hard to say if it has helped my ME. My spine and posture are miles better and so I feel better and happier in my body. I think it may have helped with falling asleep more easily.

Regardless of whether it has helped or not with the ME, I'd thoroughly recommend osteopathy. And the great thing about it is that there is an end point when the osteopath will say that you've basically got where you need to go.

It'll be interesting now to go to the Perrin practitioner in Bordeaux next month and see what he says about my situation. I'm certainly well prepared.

 

[Guwop2]

I haven't gone to a Perrin practitioner yet - I hope to in Bordeaux this summer.

But I have had eight osteopathic sessions this year so far and have explained to the osteopath about Dr. Perrin.

The osteopath looked at Perrin's book and confirmed that I have all the signs Perrin talks about in relation to ME (particularly pain, rigidity in thoracic region). He also said that my back was in general so bad that he would think I'd been in 3 car accidents and played rugby for 15 years!

That was back in January. I've responded very well to osteopathic treatment. The osteopath now says that all the car accidents and years of rugby are gone. The remaining problems are the rigidity in the thoracic region (but this is better) and that 'if everyone had a back like yours now, people would be basically okay'.

I love osteopathy. My spine is much more fluid and flexible, my neck is much more mobile. After each session, I usually feel woozy in the head as the lymph system is forced into action. That feeling wasn't so noticeable the last few times. After my first four-five sessions, the reactions were much stronger - noise, light sensitivity, needed to rest a lot, wooziness in the head.

It's hard to say if it has helped my ME. My spine and posture are miles better and so I feel better and happier in my body. I think it may have helped with falling asleep more easily.

Regardless of whether it has helped or not with the ME, I'd thoroughly recommend osteopathy. And the great thing about it is that there is an end point when the osteopath will say that you've basically got where you need to go.

It'll be interesting now to go to the Perrin practitioner in Bordeaux next month and see what he says about my situation. I'm certainly well prepared.

This is a good endorsement. I was told that 8-10 sessons were recommended, so there's a financial commitment there. The Osteopath/Perrin specialist im looking at charges £120 for the inital 90 min consultation, £90 for the second hour long session and then £65 for the subsequent 30 min treatments. My understanding is that this plan is how most of this treatment is structured.

 

[Scarlett*54]

My sister is a massage therapist and has suggested that I look into ther Perrin Technique. My experience with many treatments has been that some 'types' of ME/CFS respond to some treatments and others to others (i.e theres no uniform treatment - LDN for example messed my up for 6 months, whereas for others it has been ver succesful). Does anyone have a view on what ' type' of ME might respond to the Perrin Technique (if any..)?

LDN worked well for me in small doses. It helped me a lot with fatigue, inflammation, and long covid. I was working for a holistic doctor and saw many patients improve with LDN; especially for long covid. Unfortunately, I am among the 3% who experienced insomnia from it and sadly can no longer take it. Never heard of the Perrin Technique so will definitely look into that. Thank you!

 

[Guwop2]

I was just told by a Perrin Technique practitioner, after I said there was no definitive ME/CFS diagnosis, that I was wrong an that Dr Perrin has come up with a diagnosis that is recognised by some official medical body in the uk..has anyone come across this defintion and what do you think of it?
I found the following on the Perrin Technique website here :

"Further investigation has shown that the reversal of the neurolymphatic flow and the disturbed sympathetic nervous system has led to other common physical signs that are found in ME/CFS patients.
ME/CFS is very much a biomechanical disorder with clear and diagnosable physical signs, including disturbed spinal posture, varicose enlarged lymph vessels, and specific tender points related to sympathetic nerve disturbance and backflow of lymphatic fluid. The fluid drainage from the brain to the lymphatics moves in a rhythm that can be palpated using cranial osteopathic techniques. A trained practitioner can feel a disturbance in the cranial rhythm in ME/CFS.
By identifying the common signs in all ME/CFS sufferers, Dr. Perrin has devised a physical examination that results in aid to a definitive diagnosis. The diagnostic signs of The Perrin Technique™ have been tested and supported by the rigor of an NHS-controlled trial, published in the British Medical Journal (BMJ Open) in November 2017."

 

[Dysfunkion]

I haven't come across any massage technique I've benefited from, I mean I enjoy massages but in the CFS sense no I've never had any massage work for any of it. At most it can help me calm down easier if I'm stressed out but that's about it.

 

[Faith2007]

I was just told by a Perrin Technique practitioner, after I said there was no definitive ME/CFS diagnosis, that I was wrong an that Dr Perrin has come up with a diagnosis that is recognised by some official medical body in the uk..has anyone come across this defintion and what do you think of it?

Hey there. So there is already ME/CFS diagnosis, as I've had a diagnosis of CFIDS since 2009, but I've never heard of that one. Different doctors can diagnose in different ways. If you can get diagnosed that way, great. Getting a diagnosis could motivate your aunt and eventually get you referred to doctors you need to see. Diagnosis is also important in case you can get any type of disability benefits, which could also help with doctor bills.

But personally I wouldn't use that as a definition for ME/CFS, and don't consider it one.

 

[Guwop2]

Hey there. So there is already ME/CFS diagnosis, as I've had a diagnosis of CFIDS since 2009, but I've never heard of that one. Different doctors can diagnose in different ways. If you can get diagnosed that way, great. Getting a diagnosis could motivate your aunt and eventually get you referred to doctors you need to see. Diagnosis is also important in case you can get any type of disability benefits, which could also help with doctor bills.

But personally I wouldn't use that as a definition for ME/CFS, and don't consider it one.

I did have an NHS diagnosis back in 2016, which i have used to support benefits applications - definitely handy to have, though I didn't get an official letter, I literally just say such and such diagnosed me and no one has ever even checked.

I suppose I'm beginning to feel a little sceptical about Perrin, and holistic treatment as a whole. They feel nefarious, thinly veiled extensions of 'positive thinking' therapies, with a fat price tag in tow.