Children with ME need relevant science, not pressure to do more, more, more

[AndyPR]

An advocate and campaigner living with ME explains why she opposes Bristol University’s trials on children with the condition.

In November, Bristol University made national headlines for a £1m trial attempting to treat child ME sufferers using a specific form of cognitive behaviour therapy (CBT) over the internet. In chronic conditions, talking therapies can be useful support for the uncertainty and loss caused by illness. However, CBT is being used differently in ME with a strong agenda to increase activity, without treating the underlying disease. Bristol is also trialling a controversial ‘graded exercise therapy’ (MAGENTA). As an ME sufferer myself, I am deeply troubled to see the continued use of approaches to treat ME that can harm sick children instead of helping them.

Adults with ME feel that our views on these issues are usually ignored or caricatured. Children with ME have even less of a voice.

The hallmark of ME is an exacerbation of symptoms following physical or cognitive exertion. The repercussions are usually delayed by a day or two and sometimes a relapse can be indefinite. One day I was out walking my dog on the Downs, the next day I was struggling to sit up in bed. Biological findings into ME (myalgic encephalomyelitis) involve the immune system, metabolism and mitochondria. There seems to me no logical explanation for how this could be reversed by CBT or graded exercise.

https://thebristolcable.org/2017/01...m_source=SocialMedia&utm_campaign=SocialPilot

I think this written by one of the members of PR, good job in getting this printed.

 

[trishrhymes]

Well done Jenny Horner.

A really excellent article that manages to bring in lots of important information in a few words.

I hope parents tempted to sign their children up for FITNET or MAGENTA will see it before it's too late. And I hope the authorities at Bristol Uni. see it and take action.

I tried writing to the Bristol Uni vice chancellor about a month ago, spelling out the problems with FITNET and giving him useful links. Of course I didn't even get an acknowledgement...

 

[Jenny TipsforME]

Thanks for sharing @AndyPR I was just visiting to do that, so saves me a job and it feels a bit weird starting a thread with your own content.

Also, there's a ME Action Network Action about this http://www.meaction.net/2017/01/24/help-spread-the-bristol-cable-article-about-stopget/ the idea is to link this to increasing signatures on #stopGET petitions

Please upvote on reddit to increase exposure https://www.reddit.com/r/inthenews/comments/5pw093/children_with_me_need_relevant_science_not/
You can add comment eg with evidence or personal experience of harm

 

[Jenny TipsforME]

If people could share around facebook that would be great (facebook costs me a lot of spoons for some reason).

 

[trishrhymes]

Thanks for sharing @AndyPR I was just visiting to do that, so saves me a job and it feels a bit weird starting a thread with your own content.

Now that I know who you are, I can say very well done. It's an excellent article.

Do you know what the circulation is like for the publication? How likely is it, for example, that people with influence within the Bristol University will see it?

 

[Jenny TipsforME]

@trishrhymes I think it's very likely Bristol uni people will see it. I'll share it with a few of them over the next few days to make sure! So far I've shared with a handful of prominent students rather than staff (I think students would want to know what their university is up to).

My MP Kerry McCarthy has seen it and she's now the co-chair of All-Party Group on ME so that's useful.

 

[Jenny TipsforME]

The normal circulation isn't huge (30,000 which I think is printed), but seeing as it's online too we can get it in front of the people we want to see it. People seem to take writing more seriously if it's also in print in a newspaper.

 

[Jenny TipsforME]

In case international readers don't know what ME is, it could be worth adding comments if you share or if you see other people share

"Unsure what ME is like? Watch this https://www.ted.com/talks/jen_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose
or alternatively read http://millionsmissing.org/learn/