PWME I Need Your Help

As many of my followers are aware, I suffer with the debilitating illness Myalgic Encephalomyelitis, as do my two youngest daughters. As yet there is no cure or specific treatment for this condition. Sufferers face a myriad of symptoms which affect every aspect of our day to day life. We have to choose how we spend our limited energy on a daily basis and this leads to often having to make compromises we would rather not have to make.

Over the years I have tried various alternative/complementary therapies to try to  relieve the severity of the girls symptoms, as well as my own. I have often wished that I had access to a database of therapies, tried and tested by other sufferers, with honest reviews regarding cost, accessibility and whether or not any benefit was felt, if so for how long after each session and whether it was sustainable or not.

My hope would be that if compiled information regarding these therapies was analysed and specific therapies were found to be beneficial in relieving symptoms that sufferers could be either offered them on the NHS or given discount vouchers for them. As sadly, more often or not, they don’t come cheap and so end up being inaccessible for many of us. Even better would be for a service to become available providing discounted/or free therapies to sufferers within their own home, therefore removing the hugely energy draining travel from the equation.

As will all things, it has to be fired up from one study, which hopefully will then be picked up on and then snowball in order to make this even remotely possible. For this we need the support and input from the ME community. Without your input the studies can’t get off the ground and nothing will happen.

I have a lovely friend, Fiona, who would very much like to do something for us as she is incredibly sympathetic to our cause. She understands, from personal relationships with friends suffering from ME/CFS, exactly how we suffer and how many barriers we face from health care professionals and mental health “experts” who are slow to coming round to increasing medical evidence that ME/CFS is a serious, debilitating, neurological physical illness and most definitely not the “all in your mind” illness, as previously purported.

Fiona needs our help, so I am calling out to all people with ME/CFS, please could you take a few moments of your time to complete her questionnaire relating to your experiences with alternative/complementary therapies.

I have asked Fiona to explain what she needs in her own words, she says…

“Hi, my name is Fiona Cox and I am studying for a Health Psychology Masters degree at the University of the West of England. I am also in my final year of a three year Shiatsu course.

For my health psychology dissertation I am conducting research into the use of complementary/alternative therapies/medicine (CAM) by people with ME/CFS.

I have been interested in this condition since the 80’s when a friend at school became ill with it, back then it was known by the unfortunate tag of “Yuppy Flu”. It was very clear to me that she clearly had something very wrong with her which definitely was not a psychological problem or due to stress, as was thought at the time.

I have encountered a number of people who have become ill with this condition over the years and I am always angry on their behalf when they tell me their experiences of struggling to be believed and diagnosed.

I understand how difficult this condition is to be diagnosed, particularly with half of GPs still not recognising it as a real condition. Research indicates that as many as 80% of people with ME/CFS will try at least one CAM. I am interested in how people choose their treatments, what their expectations are and if they found them to be useful or not. I am looking for any common themes across the research data which may be useful when looking at ways to manage and improve people’s lives.

My research involves completion of an on-line survey which doesn’t have to be done all at the same time, as I appreciate that this may be quite tiring. I will also conduct a few face-to-face interviews to explore this subject in greater depth. You are invited to volunteer for this at the end of the survey but it is optional. Interviews can be done by Skype so you don’t have to leave home.

Please take this opportunity to share your experiences – it is completely confidential. The link to the survey is…

goo.gl/Iw6qvW.

Thank you for your time, Fiona”

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So folks, what do you say, are you in? Surely any person wanting to dedicate themselves and their studies to helping us deserves our full support. I for one am in and have completed the survey but Fiona needs many more of us to do this for her too. It is a very user friendly questionnaire which takes into consideration our energy limitations and so has been designed with that in mind for it to be completed in stages, as energy allows.

I hope that once Fiona has completed her research to be able to share with you her results. I am sure it will be a fascinating insight into what therapies could potentially prove beneficial For us in easing certain symptoms we may experience.

Thank you, lovely people, for reading this blog and hopefully participating in answering the questionnaire and helping Fiona with her research on our behalf and for Fiona in dedicating her studies trying to find ways to help us relieve our symptoms.

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