United We Stand, Divided We Fall

I hate when people on M.E. forums declare that they are better and can tell you how to get better.

I don’t hate that they are better, far from it. Anyone who is ill deserves to declare to the world that now they feel better. What I hate is the superior attitude that seems to suggest that those who are still ill could have been better if only they had been smart enough to follow these guidelines.

Of course the very statement ‘get better’ brings much bitter resentment. Some people seem nastily determined to deny people the right to ‘get better’. They declare that there is no cure for M.E. and therefore you can’t get better and if you are better then you could not have had M.E.

I am no expert but to me anyone can possibly be ‘cured’ of M.E. despite there not being an official cure. We are all in the dark blindly trying to work out what combination of drugs, meditation, vitamins etc will help us. Firstly, who is to say that somebody can’t get that combination right despite it not being an official cure. Secondly, who is to say that something beyond this combination had the power to cure them.

No, I don’t mean religion. I am far from religious and do not believe that god comes down and through a miracle cures people. I do believe that sometimes our bodies just heal. We have all heard of people with terminal cancer, sent home to die, six months later they feel better and tests show the cancer is completely gone. I can’t explain it. If there is not a thorough understanding of the illness and a thorough understanding of how to cure it, then nobody has the right to attack somebody for having gotten better.

Of course some are attacked for simply using the term, ‘gotten better’ or ‘cured’. Again, I believe to attack somebody is very wrong and the vitriol I have seen directed at these people is simply disgusting. However, here I might agree somewhat with the sentiment if not the method of declaring it.

It seems very clear, that few if any M.E. patients ever recover. As it is, only 25% of patients ever return to the same level of activity as they had prior to their illness. 50% stabilise and manage to go back to work but forever have to pace themselves and will have relapses at times. Many of these will not return to work full-time. The remaining 25% never improve and often suffer from severe M.E.

Of those 25% who return to the same level of activity, their lives improve immeasurably. They can hold down a full-time job, look after a family, go on skiing holidays however always in the back of their minds is the knowledge that doing too much, having a vaccination, getting an horrendous cold could lead to a relapse. A relapse of a day and then they are back to normal or a relapse that lasts years.

So I get the people who declare you can never be ‘cured’ or ‘healed’. You can beat M.E. into submission and not let it rule your life but it will always be there just waiting for you to mess up.

The declaration that if you get better, you can’t have M.E. is depressingly aggravating. Why are these people so knowledgeable about M.E. when the real experts (and by this I mean the researchers) are not exactly clear on what it is themselves? Research seems to show that there are multiple causes of M.E. and it seems to indicate that ultimately M.E. will be an umbrella term to describe multiple similar illnesses. So, those patients whose symptoms match the Canadian Consensus Criteria may all have M.E. but may not have the same illness.

You could find it horribly sad that they may eventually be able to differentiate between the different illness under the umbrella of M.E. and find a cure for some and not for others. Leaving some people with a loss of ‘life’ and others with freedom from a debilitating illness. I believe, however, we should celebrate those whose form of M.E. has enabled them to ‘get better’ rather than attacking them.

The M.E. forums have given me so much support, laughter and encouragement over the last few months. I have learnt so much through other people’s experiences and I hope I have helped others if only by being supportive. I find it thoroughly upsetting when people turn on others however. Forums should be a place to find support and not somewhere to be attacked. If you don’t like what somebody has said then ignore it, pass it by, don’t give it a second thought.

On the other hand, while I am disgusted by people who are nasty to others, I perhaps understand why.

I can only imagine how it must feel when you have done everything in your power to help yourself and no improvement. Along comes somebody else who through poor wording or unintended arrogance declares they know how you can get better. It is understandable that in frustration they strike out at the person who in their own way was just trying to help. It doesn’t make it right but it does make it understandable.

Indeed, some people may find this very blog insulting, upsetting, frustrating. I am torn between publishing and not publishing it as I feel M.E. patients need to be strong together and fight for good treatment and respect together.

However, if you were a parent at a football game and you saw your child’s team band together to beat the other team but were nasty and upset each other the rest of the time. would you be happy if nobody stepped in to stop it? As a teacher, I would be a failure if I allowed our team to win the football game at the cost of teaching students to respect each other.

Also, which team is more likely to win – the team where everyone shows everyone respect or the team where there is no respect?

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7 thoughts on “United We Stand, Divided We Fall”

  1. I particularly enjoyed reading this article as my GP has diagnosed me with all different ailments, from arthritis to fibromyalgia. I even got sent on a pain relief course, where I was taught to pace myself (which I still find incredibly difficult) and how to deal with pain when you are having a really bad day. I have now been diagnsed with PMR (Poly Myalgia Rheumatica) for which I take steroids. At first I was extremely reluctant to take them, but when the GP asked me to just try them for one week I thought I would give it a go. Well, by day three all the pain had gone!!! Unbelievable! My “I am in pain” face has gone and my friends have commented on how well I look.

    The problem is trying to reduce the dosage. I am on 20 mg and as soon as I go below that measurement the pain comes back. So now I have to deal with the side effects: weight gain (not a problem as I was skinny anyway) and a moon face.

    I know I am not cured because the pain comes back as soon as I stop taking the medication, but i now have a much better quality of life, the brain fog has lifted and I am not so tired. It still amazes me that I can strip the beds and hoover downstairs in one day without any consequences!

    Keep up the brilliant writing!

    Kirsteb

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      1. My symptoms of PMR were muscle/joint pain wherever it decided to be that day – anywhere in my body . It would wake me during the night and I found it hard to move in the morning. Pain relief would take the edge off but the pain would remain. My quality of life was deeply effected as I was suffering with chronic pain. I could go on and on but if you log on to http://www.patient.co.uk pmr you will be able to get more of an insight into it. Hope it helps. Kirsten

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  2. I couldn’t agree with this more! I totally share your sentiments and this is the exact reason why I walked away from forums and instead choose to interact with sufferers on twitter and Instagram where you build your own network, and I find comfort in blogging and reading others’ blogs. The ME community is an amazingly supportive one a vast majority of the time, but I simply don’t want to be involved in groups where those that improve are attacked and ridiculed.
    I have a feeling the situation sadly won’t improve until research advances and leads to greater understanding about cures and recovery, and recovery (rather than just relative remission) becomes a far more tangible prospect for the majority.
    Take care, Jess (jesscfs.blogspot.com)

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