The Perrin Diaries: Part 2

[Disclaimer: I am not affiliated with The Perrin Technique or Dr Perrin in any way. This is an entirely independent review of a service I have been paying for myself. I will never bullshit or mislead you about anything relating to M.E and will always offer you my completely honest, unbiased opinion on any treatments or therapies I may try.]

Part 2: An Update

It’s been a long time since I wrote part one of my ‘Perrin Diaries’ which is mostly due to a combination of distraction and brain fog. However, it’s also because when it comes to discussing anything that claims to treat M.E, I always have reservations. I know that this can be such a sensitive topic for so many and that many of us are immediately and understandably doubtful and suspicious of anything that claims to treat this disease. Latest statistics show that only 5% of M.E patients ever make a full recovery, and I know that the science behind the Perrin Technique divides the M.E community. However, this is a journey I have been on for over a year and a half now and I wanted to share my experience in case it could help anyone else, offer a sliver of hope or at least help to educate anyone who may be interested in learning more.

What is the Perrin Technique?

For those who don’t know or who may need a quick reminder, the Perrin Technique is an osteopathic treatment developed by Dr Raymond Perrin. The technique claims to help people with M.E by using massage to stimulate the flow of the cerebrospinal fluid, which acts as a protective buffer to the central nervous system and supplies nutrients to the brain. The cerebrospinal fluid is also responsible for the flushing out of toxins into the lymphatic system, which in turn acts as a drainage system to rid our bodies of harmful toxins.

Healthy people’s bodies will be able to perform this function without any help, however, in people with M.E Dr Perrin states that there is a clear dysfunction of these drainage pathways both in the head and the spine, which leads to a build up of toxins within the central nervous system. Dr Perrin believes that the reasons for this dysfunction vary from patient to patient, which is what we often hear when discussing the causes of the disease itself, but that the progression will always follow a similar pattern. Below is an image from Dr Perrin’s book, which perhaps explains this all a little more clearly:

Dr Perrin believes that if both the spine and the brain are affected by this dysfunction of the body’s natural drainage systems, the increased toxicity in the blood will reduce hypothalamic function. For those that don’t know (I certainly didn’t until I started reading up on all this), the hypothalamus is located at the base of your skull, near the pituitary gland. It is the portion of the brain that maintains the body’s internal balance, known as homeostasis. It is the link between the body’s entire endocrine and nervous systems and regulates some of the body’s key functions such as: body temperature regulation, sleep, energy, digestion, energy production and heart rate to name but a few. If you’re interested to read more about this, you can do so here.

The Cost

After my consultation with my Perrin practitioner, and after doing my own research on all of the science behind the Perrin Technique, it all made a lot of sense to me and so I decided that it was worth a try. To be honest, at this point I was willing to try anything, and this was the first treatment I had found that had its roots in actual science and not snake oil nonsense.

The first disappointment came when I realised that the treatment is not available on the NHS (although I believe this is something Dr Perrin is currently working on) and unfortunately is very expensive. The consultation alone is £90, with weekly treatments costing £47 per session. Obviously, this is a lot of money and so before I continue, I’d just like to acknowledge that I am privileged to be able to even consider this, as I know that so many people living with M.E are simply not in a position to be able to manage a cost as large as this. I’d also like to acknowledge my privilege as a moderate M.E sufferer, as I know that for severe patients – even those who could manage the cost – getting out of the house to attend a weekly appointment would be simply out of the question.

As it stands, I am lucky enough that with a few sacrifices made and some very careful budgeting we decided that the cost was going to be manageable for us and it was something my husband and I both felt that we had to try. With careful energy management and pacing I have been able to attend almost all my weekly appointments since I started last September. Now, over a year into treatment, I am finally beginning to see some small but notable improvements.

The Treatment: What Does It Actually Involve?

Ok, so here comes the nitty gritty of the whole thing - the massage techniques. I’ll be upfront with you: you are going to have to get very comfortable with your practitioner very quickly, because part of the treatment involves a level of intimacy that I assume one would reserve only for romantic partners (or not: no judgements here). That is to say that you will be topless and you will have a person you barely know massaging your breasts (breast tissue, to be precise). This is because the breast tissue houses the varicose lymph glands, which often the most congested area of the lymphatic system in M.E patients, according to Dr Perrin.

I’ve always had a weird phobia of people touching my chest (I’m not going to make any innuendo here, let’s all be grown-ups about this), so honestly the first couple of sessions were just a bit odd and uncomfortable but my lovely practitioner could sense my discomfort and so talked me through everything before she did it, carefully maintaining eye contact whilst massaging my baps with coconut oil. A true professional.

Next comes the soft tissue massage of the front and sides of the neck, the back and thoracic spine area, as well as some manual manipulation of the spine itself. Finally, each treatment ends with some cranio-sacral therapy, which stimulates cerebrospinal fluid drainage and claims to reduce brain fog and promote energy production. I’m not really sure about the technical ins and outs of all that, but I can tell you that it feels bloody amazing. If you actually would like a more technical explanation of all of this you can read more on Dr Perrin’s website or in his book, which goes into detail and provides pictures of the technique in action.

The Treatment: How Does it Make You Feel?

Obviously, I expect that the experience of the treatment itself differs for everyone but I can tell you that the massage is very gentle and the practitioner will only do as much as they think you can tolerate. I was warned during my initial consultation that I should expect to feel a worsening of symptoms following my initial treatments, as my body was being kickstarted into draining out a long built up level of toxins. This was certainly the case, I experienced severe PEM (post exertional malaise) after my treatments for at least the first 4 or 5 months. I would often feel completely wiped out, and that ‘poisoned’ feeling that so many people with M.E describe would often follow.

I was also told that I shouldn’t expect to see large or fast improvements and that the time it would take would depend both on the severity of my condition and how long I had been sick for. Dr Perrin includes a useful table in his book which explains his estimation of this:

According to Dr Perrin’s chart, I score somewhere between 2 and 3 and so should expect that the treatment will take over 2 years. Obviously, this is disheartening to read because we all wish for a quick fix, but realistically we know that this simply isn’t possible. One thing I liked about my practitioner during my first consultation was that she was very quick to let me know that this wouldn’t be a cure or a quick fix, but that she and Dr Perrin felt that instead it was one large piece of the puzzle of treating M.E. I felt like I was in safe hands, because naturally I have become extremely wary of anyone claiming to have the cure to an illness that so few ever fully recover from.

How Am I Now?

Now that I’m over a year and a half into my weekly treatments, I can say with certainty that it is not a quick fix (not that it ever claimed to be) and while I am certainly not cured, I have seen some very small but hugely important improvements. Most notably, I am now able to do more around the house. I’m able to stand for longer periods in the kitchen to prepare some simple meals, I can load and unload the dishwasher and fold the washing, and I’m able to walk around the house more without needing quite so many rests. To a healthy person, these may sound like tiny, unimportant changes but to me they have been monumental.

The biggest improvement I’ve noticed, however, is that my recovery periods have shortened considerably. Don’t get me wrong, I do still suffer quite extreme Post Exertional Malaise symptoms but what once took weeks, even months, now usually takes days. Of course, this depends on the level of exertion involved, but I generally find that I bounce back much quicker than I used to after an activity. Full disclosure: this could also be down to the fact that I am simply learning how to better manage the illness, but I absolutely believe that my Perrin treatments have played a part in getting me there. I am still very sick and I am still predominantly housebound, but progress is progress no matter how slow or incremental.

Finally, my Perrin treatment has helped me in a way I did not foresee. In a medical culture of doubt, negligence and disbelief there is my lovely Perrin practitioner who believes me. She listens to me. She cares. She doesn’t downplay my symptoms or tell me I need to be doing more. She doesn’t tell me it’s all in my head, or that perhaps I’m depressed. She helps me in ways that no doctor or nurse ever has. She gets it. She understands. And that is worth its weight in gold.

I hope this post has been helpful and informative. I plan to update you all again in another six months. Again, I will reiterate that I am neither a scientist or a medical professional. This is simply my summation of the treatment as I understand it. Please do your own research before engaging with this or any other new treatment.

If you have been having the Perrin treatment yourself, how do you feel it’s going? If you have any questions about my treatment that haven’t been answered in this post then please feel free to ask in the comments, and I will do my best to answer them all.