"This is what it's really like to have the debilitating but misunderstood condition ME"

I'm not sure whether this has been posted yet.
It's probably the kind of story journalists know people want to read - as long as they don't have M.E., that is.
"misunderstood condition"? You can say that again.
http://www.walesonline.co.uk/news/health/what-its-really-like-debilitating-12612841

 

Thanks WalesOnline. This is exactly the sort of article I want what passes for a native media in my country to be producing. 10/10

 

@Aurator I concur, assuming I have interpreted your comments correctly. This article will do nothing to make ME better understood. In fact, it will do the opposite. Here are a few quotes:

"Tom Martin, who has ME, said running was a huge help in combating the condition.

To fight tiredness I was told I had to do something that made me tired – it seemed crazy.

The idea is called graded exercise therapy. . . . It was the necessary evil, the medication.

Running is just awesome, it’s the perfect sport for someone like me. With ME every day is different – every run can be adapted to fit in with how I feel.

Steps turned into miles, I joined a club, and inevitably someone mentioned the word “marathon”.

Not satisfied with just a marathon, I also had this stupid idea of trying to run it in three hours.

Despite everything I was disappointed with my time. The 10 minutes I missed three hours by felt like forever.

I think there may always be an element of tiredness in my life but I have accepted that. I feel in control of the ME rather than it controlling me.

There will be many more races and marathons. I will try everything to keep one step ahead of the ME."

My rating: 0/10 for inaccuracy, at least based on my experience.

 

How bizarre. I can only assume he had something different, not ME. Or he had recovered before he started the running.

I don't blame him for telling his story. He is probably unaware what an atypical case he is. But this will do huge harm if, as will inevitably happen, other people are encouraged to follow his example. And others will be judged on the basis of this individual story.

Do we have any members in Wales who can write their story as a counterexample, and get it published?

@charles shepherd can the MEA request an opportunity to write a response? We really need an authoritative voice pointing out the evidence and dangers of pushing through with aerobic exercise.

 

Misdiagnosed.

 

Oh God, this is appalling for ME sufferers and now lots more ME sufferers are going to feel completely inadequate that they can not even begin to think about running. Worst still very dangerous for many if they read this and think it's the answer to a cure.

Personally, if I was in his shoes I would not be going public in this way as I would feel I had more of a responsibility to the wider ME community particularly youngsters.
But media likes success stories of people pushing through and achieving against all odds.
Agreed I would like to see a response to this from the MEA.
You dont think he has connections with and been put up to it by St Esther do you? Being in South Wales Bristol may have been his nearest clinic in his youth.

 

I want to be nice but this reads like a propaganda piece from creepy crawley, it doesn't seem to say which university he went to but cardiff isn't that far away from bristol ...

These type of news websites are usually intended for people that wouldn't be able to pass a GCSE

 

The comments underneath are good so far. Thank you to whoever wrote them. Wales Online is the biggest local news site in Wales, and some of these articles turn up in the widely-read South Wales Echo. Hope not! If it does I'll write in.

"To fight tiredness I was told I had to do something that made me tired."

!!!! This young man has been misled by doctors who are probably just as clueless themselves.

 

Link to their Facebook post about it, there are quite a number of sensible comments made already though https://www.facebook.com/WalesOnline/posts/10154425448362183

He also blogs here, http://memyselfrunning.blogspot.co.uk/ - I think in one of his posts he does express concern that he's promoting something that doesn't work for many patients, but then justifies it by expressing concern for those patients who it would work for and who might miss out. I get the impression that he is well meaning but dangerously under educated about ME itself.

 

If he just thinks it is something that doesn't work for many patients then I can see that he thinks it is ok to promote it as it may work for some. But the problem is is that it doesn't just not work but it harms a lot of people who try it. Hence promoting it is bad. I suspect he doesn't understand the dangers.

 

Exactly.

 

This breaks my heart, how I would love to run how I would love to dance, and ski and cycle, but I know I can't because like pretty much everyone else if not everyone else with this condition, it aggrivates the condition and makes me very unwell.

And here is someone with the headline "this is what it's really like to have this debilitating condition and he runs, not your average mike or so or 10k but f**king marathons to" combat" the condition.

How many doctors, parents, friends of ME sufferers are going to read this and say see told you, all you need to do is get running and that will control and keep your M E at bay



This is not like other accounts of so called cures this guy is claiming the thing that potential does us the most harm is what manages his ME and keeps relapse at bay, the absolute opposite of the rest of us, complete a typical and he's the one with his story in the press claiming this is what it's like to have ME.

This is as ridiculous as getting a man to write an article under the heading, this is what it's like to give birth.

 

To be honest, a couple of sentences in I knew where we were gonna end up.

There is a great deal of emphasis on the word "tired".

No talk of any of the issues most of us would instantly recognize: headaches, light/noise/scent/touch sensitivity, cognitive problems, sleep problems, pain (lots & lots of that), problems standing (or even sitting upright).....

I am glad for his sake he seems better, but he is not describing an illness that I have experienced.

Very dangerous article. I am sure he means well, but this article could cause untold harm to pwME.

 

The trouble is when you have one of the main ME charities actively promoting walking/running marathons to fundraise you have to ask what kind of message is this sending out. Can't find it now but last year one of their members 'an ME sufferer' was training for a marathon to raise money for AfME.
This is currently on their website along with a lot of others for presumably non-sufferers to fundraise (although they don't seem too bothered about who applies) :
Fundraiser of the week - Karen Risidore
February 17, 2017

Our fundraiser of the week is Karen Risidore, who is taking part in the Walk with M.E. event this year.

The idea behind Walk With M.E. is for participants to walk a total of 1 million steps between Wednesday 1 February and Thursday 11 May. Participants can be in teams of up to five people and can raise sponsorship via the Walk With M.E. JustGiving page.

"For all of my adult life I experienced this exhaustion that I couldn't explain. I used to wake up exhausted however much sleep I got and would spend all day complaining how tired I was much to the annoyance of everyone around me. I used to say, one day you'll find there's something wrong with me and I'll say I told you so and you'll feel guilty.

"That day came in 2009. For years and years before that I had been to the doctors asking what was wrong with me, and they had run blood tests and told me there was nothing wrong. It was only after seeing a feature on 'this morning' with my dad about M.E. that everything suddenly clicked into place. After more tests I finally got the referral to an M.E. specialist consultant and he diagnosed me almost instantly. Even though it was a relief to finally get a diagnosis it has still been a struggle ever since that day. It's a largely unheard of and misunderstood condition. The usual response is that people think you are lazy. I've also had people tell me I can't possibly have M.E. or I'd be in a wheelchair or bedridden.

"I have three children and whilst I chose to have these children it does mean that to a certain extent even when I have a flair and feel like all I want to do is stay in bed, I can't as there would be no-one to take the children to school or care for them. That said there have been plenty of times I have returned to bed as soon as the children have left and only got up to pick the children up again

"With this challenge I'd like for people to become more educated about this dreadful condition but also raise funds for research so more can be learnt about this condition and how it could be helped or maybe even in the future prevented (if that's at all possible)."

by the by, also on their website: They will have a stand and be dishing out info at a neurology conference next month.
https://coursefinder.bmj.com/course-details/1055/one-day-essential-neurology/?porder=Neurology|Conference

A lot of newly diagnosed seem to be being directed to AfME as a matter of course, and I'm guessing similarly children (or their parents) will be being directed to AYME.

Sorry I know this is off topic and not related to the article being discussed but I think it all comes under the category of mis-information..............not wishing to sound like a certain leader of the free world recently described as 'a tangerine with a comb over'

 

I saw this article a while back and they're obviously encouraging the minority who benefit from their treatment to approach the media and unwittingly write propaganda for the BPS model:

http://www.mix96.co.uk/news/local/2...with-chronic-fatigue-syndrome-now-running-5k/

 

see now here is another example..............on closer examination she was treated by the 'Chronic fatigue' service and not the Oxford Chronic fatigue syndrome/ME service.
http://www.ouh.nhs.uk/chronic-fatigue/

 

Well that's exactly it isn't it - like comparing someone with a paper cut to an amputee....

 

To fight high blood sugar, I was told I had to do something that made me have high blood sugar – it seemed crazy.

To fight AFib, I was told I had to do something that made my heart beat irregularly – it seemed crazy.

To fight high blood pressure, I was told I had to do something that made my blood pressure increase – it seemed crazy.

To fight epilepsy, I was told I had to do something that made me have seizures – it seemed crazy.

To fight sleep apnea, I was told I had to do something that made me stop breathing – it seemed crazy.

 

Exactly! Love the talks of Prof. Chris Snell. In one talk he said just this, that ME is the only illness where patients are told to do more of what makes them ill. He compares ME to the overtraining syndrome and says that every doctor would tell an overtrained athlete to rest and take it easy and asks why it's the opposite recommendation for ME.

And I really liked the blog post, where Jamison writes it's like a doctor telling you, "I want you to smoke 20 cigarettes a day. Don't worry, you can start with one cigarette and work your way up to 20."