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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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It’s common knowledge human contact and an interested practitioner can have a strong placebo effect. Add to this, the paying out of money ( a strong motivator of the placebo effect ), and you have every reason to believe it’s doing you good.
Bingo!I think the placebo effect is very overrated, and very often is summoned up when someone doesn't understand how or why something happened.
So, you're definitively saying that nobody has ever gotten any health improvements from massage therapy other than feeling more relaxed? If so, I have to say, that's quite an assertion.So most people enjoy manual therapy. Great! You will feel more relaxed. But better? Cured? Of course not.
Hi Wayne, people get benefit from human touch and because people are spending time with them. This is well known. But curing ME? I don’t thinks so.So, you're definitively saying that nobody has ever gotten any health improvements from massage therapy other than feeling more relaxed? If so, I have to say, that's quite an assertion.
There are significant recovery or improvement stories by pw/CFS using any number of therapies, including yoga, Qi Gong, lymphatic massage, and much more. They don't often come to a forum like this to report their improvements because of (well founded) concern of causing anger and disbelief, or simply being ridiculed.
I can't tell you how many angry comments I've seen by disbelieving pw/CFS who say something like, "If that works, then everybody would be doing it." End of story. And/or, "Show me the science." It's pretty sad really. It's why I post relatively little on the "couldn't possibly work" therapies that have done wonders for me.
we know buddy. I've had a sepsis wich got me ME in the first place and let me tell you everything about this is horrible.ME IS A COMPLEX SYNDROME. It alters our metabolism, wreaks havoc on our nervous system, producing a range of horrific mind numbing symptoms which can and at times does eventually lead to death. ME has become popular with DIGNITAS ( 6 ME sufferers have chosen assisted suicide in the last 21 months ). Why ? Because we have an INCURABLE serious soul destroying condition. That’s right, many people would rather be dead than living with the insult of ME.
Will be interesting to see how you get on doing the Perrin technique at home. See if you notice any benefits at all. I think someone earlier in this thread did it for months before seeing a practitioner and got some results. Of course everything varies so much from person to person!I'm currently doing the perrin technique at home, mainly only for head and chest area though.
as far as i can tell i enjoy it, but I dont "crash" after it like another user here that claimed it helped his daughter. maybe my ethiology of illness is just different then hers.
i am pretty sure it can support the lymph system in a way that is useful for people that dont move around a lot (from my knowledge the lymph system is mainly kept in movement via muscle contractions, wich all of us dont have all too often...)
its good thing to do, but far from a single source of cure, imho.
Sorry to hear you're having a bad day DonPepe.Yeah sorry about that I’m having a bad day
Hi all,
I'm new to the forum. Has anyone got on any updates on how they're getting on with the perrin technique?
I started a few weeks ago after hearing about but feeling skeptical. I've found I have felt worse during the first few weeks of the treatment so far but trying to remind myself that this is a good thing!
I am six months into the treatment now, and I am seeing small but significant improvements. I'm pottering around the house more, and I'm also able to leave the house/socialise on consecutive days, which is new for me. The first twelve weeks were bad, I had so many toxic drainage symptoms, including the return of old viruses. I would say the symptoms started to reduce around week 14 and I started to see slight improvement around month 4. I know it doesn't help everyone but I can only speak from personal experience, it is making a difference to me. Are you a member of the Facebook group @Curtains ? You might find it helpful if you want to hear other people's experiences.
I tried the Perrin Technique years ago. I found it really difficult having to do hot and cold packs and massage 3 times a day. I didnt have the energy for it and I felt worse. It was also expensive. He was doing a trial for a way of diagnosing ME/CFS using his technique. He said the NHS were interested. That was the last I heard of it so presume the research wasnt a success.Hi Wayne, people get benefit from human touch and because people are spending time with them. This is well known. But curing ME? I don’t thinks so.
I had eighteen weeks of the pseudoscience a long long time ago from Perrin himself. As far as I’m concerned it relaxed me and may have got some endorphins going. But cure? Osteopathy has been claiming it can cure multiple conditions since the alternative therapy was conceived. It gives them the credibility they yearn for. But to my knowledge it’s failed in curing any disease, I am very severe and have been for a long time. I’ve tried 53 alternative therapies and 114 different drugs. I know what moves the needle and it’s not the Perrin technique. It’s just glorified pyramid scheme with a dash of pseudoscience. To me it always seemed like a glorified pyramid scheme.
Your response tells me you a more fearful of having your hopes dashed that the treatment’s functionality. Indeed the classic “the bumff says, I may get worse before I get better bs” is mentioned earlier in this thread. The quintessential snake oil salesman quote”.
I wish some people would get a grip. I mean what other illnesses these days say alternative medicine cures diseases? Virtually none.
And these claims like with the Perrin weaken our fight to get the ME taken seriously. We are derided because , you like it or not the medical profession thinks of us as a shower of hypochondriac cranks.
ME IS A COMPLEX SYNDROME. It alters our metabolism, wreaks havoc on our nervous system, producing a range of horrific mind numbing symptoms which can and at times does eventually lead to death. ME has become popular with DIGNITAS ( 6 ME sufferers have chosen assisted suicide in the last 21 months ). Why ? Because we have an INCURABLE serious soul destroying condition. That’s right, many people would rather be dead than living with the insult of ME.
ME, our condition, and its treatment have baffled to of the best scientists in the planet. Why? Because it’s a complex autonomic condition that is multi sensory. I’ve documented through my life 116 symptoms.
It is SERIOUS, and Perrin and his merry band don’t have the answer. IMHO
I tried the Oerrin Technique about 10 years ago. It was at his clinic. Your first session is with him and then you are treated by one of his colleagues. I didnt have the energy to do the ice and hot packs three times a day plus massage. I felt worse so gave up afterv3 months. He also recommends supplements which are expensive. The whole experience was an expensive waste of time for me.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.
When I went to his clinic he was in the process of doing his study on his diagnostic technique. He said he was carrying it out for the NHS. If the study was a success, why wasnt it adopted by the NHS as a diagnostic tool?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."