Worst ME Treatments

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Living with an Illness ME Random Rants

Worst ME TreatmentsI had a lovely Twitter session this morning with a great group of ME sufferers that literally had me howling with laughter. One Australian Twitter user asked “After the serious #SEID IOM discussion, I need some Friday night levity. What’s the most ridiculous treatment someone recommended to you?” and it got me thinking of the worst ME treatments that I’ve tried and some of the even worse things people suggested but I had the good sense not to try. So here I will share some of these with you and I promise, if you’ve tried these and found help or even if you’ve tried even more ridiculous ‘treatments’ I promise there is absolutely no judgement. I know this illness and in our desperation to get better, we will try almost anything and also some people find relief where others do not.

Most of the ones I tried in the following list were in the first few months after I was diagnosed. I didn’t know anything about ME, but I had no intention of accepting that I was ill and wanted to get on with my life. I went away for 4 months and tried many alternative treatments, some of which I had never even heard of and I knew nothing about.

Physiotherapy

So this seems like a rather conventional and good treatment, especially if you have mobility issues. This was something my rheumatologist recommended about a year before I was actually diagnosed with ME, so I can’t blame anyone for anything here. The physiotherapist could see that anything I did was causing me a lot of pain and she said my joints would heat up as if I had RA, but I did not have that. She also said she didn’t think physiotherapy was right for me as it was becoming apparent the issue was neurological and she would need to speak to my specialist and she’d let me know. Good, right?

Not really, because she apparently forgot all about this and suggested therapy in the hydrotherapy pool. So I went back a week later with my swimming costume and climbed into the pool with my physiotherapist and another patient at the other end of the pool. She told me to move my head from side to side, to loosen up my neck while she gave the other patient instructions. The next thing I knew I woke up on a metal lift as I was being lifted out of the pool – I had passed out. No more physiotherapy in or out of the pool after that.

Homeopathy

There may be shock and horror at me having included this here, as so many people swear by it, but after my experiences with Homeopathy and subsequent research, this, for me at least, definitely belongs on this list. This was the first alternative treatment I tried because my friend said she always used it instead of allopathic medicine.

The homeopath that I saw was a lovely lady, but her little sugar balls did absolutely nothing to help me! All I managed to do was make myself even more ill by going to her office every few days and I spent a fortune.

Anyone who is considering trying Homeopathy, please watch the following clip where Ben Goldacre very succinctly talks about it.

Reflexology

Another one that I know many people find helpful, but it didn’t help me. I will admit that some people may find someone pressing points on their feet relaxing and thus this ‘treatment’ acts as a way to de-stress. But as a cure? It did not have any positive effect on me, except lightening my wallet, and that’s hardly positive. I was bedridden for 10 days after the session and the practitioner claimed this was my body detoxifying. I now know it was me over-doing it by talking, interacting and pushing myself to do more when I should have been resting.

I have to admit that I don’t like anyone touching my feet (I was once compared to Eddie Murphy’s character in ‘Boomerang’ for my issues with feet) so I didn’t even find the treatment at all relaxing.

Ginger

Bear with me a moment before we actually get to the gingery part of this treatment. This one was thanks to a yoga teacher who decided she could cure ME. The day she came around to see me, I was laid out flat and having problems breathing. So the deep breathing exercise she put me through nearly knocked me out. Let alone the actual yoga exercises she tried to get me to do. These were nothing drastic; I got to do them lying down, but I was so fatigued and in so much pain anyway, that just moving my head around caused serious pain and I burst into tears. I was told I was not being positive and had to push through the pain.

She asked me about what I ate and when she suggested a few things, I told her I had an intolerance to them. She said that was nonsense as there was no such thing as an allergy or intolerance. If my body was reacting I needed more of that food type, not less. This was why she suggested I needed to rub myself with ginger juice from head to toe every day.

I’m ashamed to say I actually did it. By that time I was so worried about appearing ‘negative’ if I refused, that I was afraid to protest anymore. Wow did that that ginger burn! After 3 days I had to stop because I developed a rash all over my body. I’m more confident about myself and know more about the illness now.

The Lightning Process

Right, so we’re moving into the territory of treatments that people recommended but that I never tried. I looked into this one myself after seeing it suggested in a few ME forums, but I didn’t try it at the time simply because I didn’t have the almost £600 that it cost. But I did go back and look at it again when my mum offered to give me a loan.

What I don’t like about this treatment is the purely psychological approach that it takes with an illness that is physical. I’d also read feedback from people who had tried it and who said they were blamed quite strongly by their practitioners when the treatment did not work. A friend and fellow ME sufferer did try the treatment and she said it helped her. She also gave me copies of all the paperwork she had been given on the course as a way to encourage me to try it. Unfortunately seeing these actually increased my doubts about this so-called treatment.

Let me be clear; I think psychological approaches can help us to have a better understanding of our situation and help us to deal with the stresses of being ill, but they are not a cure. As someone who had previously studied NLP and been a very positive person, but who had still managed to get ill, I was and continue to be very sceptical.

If you’re considering this treatment, please do your research; there are some very negative reviews from people who have actually tried it and some very good justifications for why it could not work. This article on the ME Association site has some varied views. One person states “IF THE Lightning Process worked for Ms Gibson, she never had ME in the first place. Her understanding isn’t congruent with 60 years of biomedical research into what the World Health Organisation defines as a neurological disease.” I wholeheartedly agree.

Drinking Cow Urine:

So I wanted to end with the most bizarre and yes folks, you read that right, someone once suggested that I drink cow urine as a cure for ME. The man who suggested it (a family friend – or at least he used to be before that suggestion) even offered to give me a bottle of the stuff that he just happened to have lying about. Now, I should add that he is Indian, so with the cow being a sacred animal in India, this may be connected to some religious belief. But surely a cup of milk would have sufficed, why urine? An option for those that are lactose intolerant, perhaps?

Needless to say this was one I did not consider let alone try! I talk about this one a little more in the video below:

BE SAFE FOLKS – WHAT WORKS FOR ONE PERSON MAY NOT WORK FOR ANOTHER. PLEASE SPEAK TO YOUR DOCTOR BEFORE DECIDING AGAINST ANY TREATMENT BASED ON MY OPINIONS HERE.

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  • Sasha Nimmo

    Ha ha, that cow urine one is still funny!

    • Jay

      It’s so funny, but I just spoke to a lady a few days ago who has psoriasis and someone suggested cow urine to her too!

  • sophy

    I agree about the homeopathy (if I had any reaction it was that it made me more ill/poor) excépt for one; Crotalus, drives the viruses that are too small to detect with regular tests out but did need a few months of good ol’ plain ABX too since for some reason bacteria and “stealth viruses” as I believe they are called cling together in our poor infected brains, and some other parts I’ve since found out (ouch!)

    and ewwww I even consider milk slightly disgusting since I learned there’s, uhm, cowpus in there

    • Jay

      I definitely find milk super disgusting, let alone cow urine!

      • sophy

        I’d do that before LP hihi

        • Jay

          I think I would have to agree with you 😉

          • soph

            ordered some Crotalus (by Heel) yet? ;-))

            (or sip it while letting the LPers give me an overpriced peptalk)