Wednesday, 30 October 2013

ME/CFS: Places you can find out about my condition

ME/CFS, the condition I have, is one of the things that I am not going to write about very much. This is because there are numerous places you can go to find out about it and also numerous people blogging about living with it. Although everyone is affected slightly differently, I do not think I can add much original material to the internet regarding ME specifically.

However, I know that there might be some people wondering what it is exactly that I have, so I will provide you here with a whole load of links that I have gathered over the last couple of years. You can pick and choose which ones you click on, depending on how much you want to know and how much time you have!

ME charities

The following are UK charities who fund support for people with ME, research into the condition or a combination of the two. Their websites give basic facts about ME, such as what the symptoms are and how many people are estimated to be affected. On their news pages you can find out about the latest research findings.


There are lots of videos on YouTube about ME/CFS. Most of them are depressing, a lot of them are just words with sad music. Although I can understand why people with ME want others to understand how truly awful it can be, I find it difficult to see how such videos can really change people's minds about the matter. Feel free to correct me if you have seen one of these and been moved by it.

However, is isn't all bad. The two links below are the best videos about ME that I have come across, although there may be others. They are each made by a teenager with the condition, and they provide an excellent explanation of the condition and surrounding issues that people with ME may experience.

There are also various films that people are trying to make about ME (including interviews with researchers etc), but a lot of them are relying on crowd sourcing the funds, so only trailers are available at the moment.

Again, I am somewhat skeptical of what this awareness-raising will actually achieve. But on the other hand, I do believe that more research and better recognition is desperately needed. ME affects more people than, for example, MS, yet more research has been done on MS and therefore more is known about it.
Voices from the Shadows is a UK film that was released in 2011. It focusses particularly on those with very severe ME, who are often bedbound (I do not fall into this category).

The Blue Ribbon is a film in production, currently looking for funds to enable completion. It is based in the US and should feature interviews with patients, family of patients and researchers.

Canary in a Coal Mine is a very new project based in the US. It has attracted a storm of attention online and looks very promising. The woman behind it has ME herself and is very well-read on the subject. She is interviewed here on the TED blog.

ME blogs

On the right are links to other blogs I read. There is a small list of blogs about ME, but it is worth noting that some of the  people in my other blog lists also have ME. It isn't the main focus of their blogs, but there are places where they mention it.

Danni in particular has written a great piece here. Although it is long, it sums up pretty much all the important things about ME, in a way that is pretty easy to understand.

If you would like a US perspective, this is a good place to start, and there are some other US ME blogs and websites linked from there on the right hand side of the page.

Current Issues

Currently there are 2 major issues causing uproar within the ME community.

In the US, the HHS have just signed a contract with the IOM to produce a new case definition for ME/CFS. The problem with this is that it is likely that experts in the condition will not be part of the process, it is costing a lot of money and in any case there is a definition that was published in a journal several years ago that the scientific community view as perfectly adequate (The Canadian Clinical Case Definition). This definition has not yet been adopted as diagnostic critieria by any country although it has been used many times for research purposes. The view of patients and many international experts is that the Canadian definition should be adopted by the US health authorities and the money instead spent on further research.

In the UK, the National Institute for Clinical Excellence, who produce guidelines for treatment of many diseases and conditions, recently announced that they would be placing certain conditions, including ME,
on a static list, not to be reviewed often. The view of patients and the MEA is that the current NICE guidelines fall short, and in the light of recent research (and the Canadian definition which NICE ignored first time round), desperately need updating. Originally, it was anticipated that the guideline would be updated this year.

In-depth Information

If you are really keen to know lots about ME, these links are to websites which provide more in-depth information about research and the politics surrounding the illness. They are both US-based but with an international emphasis.

Cort Johnson

So there you have it. ME in not-quite-a-nutshell. Unfortunately being such a complex, misunderstood illness surrounded by ridiculous politics, it will not currently, if ever, fit in a nutshell.

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