me/cfs: reflections from the other side

Is Recovery From me/cfs possible? This is a question I asked myself for 8 years when I was suffering from me/cfs. If you think about it, if something is not impossible, it is 100% possible. I want to share what I have learned from this condition, as someone who has recovered from it, in the hope that it might help others. I am a Hypnotherapist and Wellbeing Coach. If the information I share is helpful to one person, then I will consider that a success.

I am passionate about wanting to help people with this condition, because:

1. I recovered my health, and I believe I understand what helped my recovery.

2. I have coached many people with this condition over the last 9 years. Contact me for testimonials.

3. I lost a friend, Mark, who had me/cfs, who committed suicide, and know of others who did the same. He would call me from hospital, asking if I could help him in anyway. At the time I was also debilitated by this condition, and didn’t know how I could help him. I believe that if I had known back then what I know now, I may have been able to help him.

me/cfs: My Manifesto
I want to share my me/cfs manifesto. A manifesto can be defined as a declaration of one’s beliefs, opinions or intentions. These are some of my thoughts about this me/cfs that I believe are useful to adopt. Please feel free to add to these, or to create your own manifesto, taking the bits that you like.

1. Terminology
Some people prefer the term ‘ME’, others say that this term only applies if you have had this diagnosis, which they argue can only be diagnosed by a brain scan. Others do not like the term ‘CFS’, as it has been used in the USA in particular to argue that the condition is psychological and therefore not covered by health insurance. Personally, I think that this is an outrage. I think it is an individual choice what terminology people use, and that they should not accept that CFS is ‘psychological’. No one should be oppressed because of the choice of terminology they use.

2. Get a Diagnosis
If you are experiencing a health issue, for instance fatigue, but have not been diagnosed, then you need to get a diagnosis. Fatigue can have many causes, and it is important that your doctor identifies and/or excludes possible causes.

3. ME/chronic fatigue syndrome is a real condition
It is not all in the mind. It is recognised by World Health Organisation as a real physical condition, and Doctors who suggest otherwise are not following guidance issued to them. If your Doctor is dismissive and unhelpful, please consider getting another Doctor and/or making a complaint. You do not deserve to be treated without respect. Some doctors seem to think about this condition in the following way “I can’t find a cause, therefore it doesn’t exist. Therefore it must be all in the person’s mind.” I have experienced this way of thinking, and it still shocks me. It assumes that:
a. Doctors know everything. They don’t. As you will discover when I share my experience of having me/cfs in a future blog, a doctor who is trained in Nutritional Medicine and Immunology identified conditions that a conventional doctor, not trained in these areas, would not have identified, or even be looking for.
b. Every possible medical condition and cause has been identified. How can this possibly be true?

4. You are not to blame
It is not your fault that you have this issue. Like most people, you have tried your best to resolve the health challenges you face. It is a challenging condition to deal with, and I wouldn’t wish it on anyone.

5. You have a right to be treated with RESPECT
No one has the right to treat you without respect just because you have this condition. It is important to develop strategies to deal with people whose behaviour towards you is inappropriate. I am happy to share some thoughts on this if anyone is interested.

6. You Have A Right To Make Mistakes
As already stated, dealing with this condition is challenging. When I was ill, it felt a bit like walking a tightrope; one false move and I fell over. If I didn’t exercise- at times, I couldn’t walk for one minute, sometimes I wouldn’t sleep. If I did too much exercise, which often was only for a few minutes, then I often relapsed.

You might try certain things in order to see if it will help you get better, some might result in improvements, others might not. At times, you might make mistakes, for instance you might overdo it. Lying in bed berating yourself is not going to help, as you probably already know and have experienced that even small amounts of stress can make you feel worse. So it is important that even if you do make mistakes, that you treat yourself with kindness and compassion, and treat yourself as you would treat others.

7. “Never, never, never give up.” Winston Churchill
When you are down, try and reach out, talk to someone. I know this is sometimes easier said than done. When I was very ill, I would say to my mum “I want to talk to you for 5 minutes, then I need to stop”.

In future blog posts, I will share some strategies that people with me/cfs might find useful in dealing with this condition. However, I am not only interested in helping people cope with this condition. My goal is to give people information that may help them understand how they can beat this condition.

Comments
How are the issues mentioned affecting you? How useful did you find this article? Please leave a comment, and feel free to contact me if you have any questions.

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SIMON PIMENTA is a hypnotherapist, coach and trainer working with people to boost resilience and performance, and minimise stress.

After working in a demanding job as the Director of a Housing Trust, he went off sick and remained unable to work for the next 8 years.

He discovered a pioneering approach to resolving health issues and quickly got back his health, and now trains others using these same techniques, to help them become happier, healthier and achieve their goals.