Cambridge ME protest calls for better medical training across UK

People with ME have been protesting in Cambridge, calling for doctors nationwide to receive better training on the condition.

https://www.bbc.com/news/uk-england-cambridgeshire-66844565

 

A very good BBC article.

BUT we must get rid of the word "Tiredness" and have it removed from ALL reporting on ME. The word "Tiredness" is trivialising our disease and poisoning the messages to the public.

 

Agree. They should also use terms such as debilitating chronic illness that destroys lives instead of 'condition' in their titles.

 

"Disabling chronic illness"

 

i know i mean how can this

and this

go together?!

Its sickening keeping reading people being conditioned to think i have 'extreme tiredness'. No wonder we've got people dying because the hospital doesnt want to go out of its way to help PwME, i mean if i was a Dr who'd been on shift for 36hrs and actually suffering from "extreme tiredness" i wouldnt have a lot of sympathy for people being 'too tired' to chew/swallow.

FFS

 

oh but if the people protesting happen to see this...

very well done!

 

I recently heard people in the media talking about being tired all the time. These are supposedly healthy people who work full time, and have busy lives outside of work. They, and countless others with similar lifestyles cannot be expected to understand ME at all if it's described as chronic tiredness, or extreme tiredness, or for that matter, if it's called chronic fatigue syndrome.

 

Does anyone know which show or what time the segment was on radio so I can record it.

 

Agree on the tiredness one, hard to do. And of course on well done for this protest - not easy to do at all with ME, so massive admiration to them.

One other awful side-effect of the usage of tiredness inaccurately instead of ill is that we do get tired, but it is tired in 'our illness state' just like normal people would be tired for their normal - of course when we say it we mean 'even more debilitated and needing to go and crash' and not that we are tired like 'them/normal people'! And we also have to look out for it given PEM and fatiguability.

COuld you imagine if someone with MS who had fatiguability as a big part of their condition and needed to look out for managing it found that every time they needed to say 'I'm getting tired now' which meant goodness get me to my bed because it's really not good it was interpreted as 'almost as tired as after I've done a full days work/with the kids'?!!!

 

This is the major problem with the main NHS England site.
Cambridge and Peterboroughs site is actually not bad, and much better than the main NHS site;

https://www.cpft.nhs.uk/service-det...omyelitis-me-chronic-fatigue-syndrome-cfs-70/

maybe if the charities could lobby those services who have 'good' info on their sites (ie those who don't use 'extreme tiredeness' and actually include PEM in their main symptom list).
ie thank them for the better info and ask them to help get the main site corrected.

After all, if they do take ME/CFS seriously, they should be as concerned as we are by the NHS description undermining attempts to improve awareness of the true nature of ME/CFS, and unfortunately this is the info that time and again the media and presumably the public also access.

 

The people at the protest know only too well the issues with this piece and it shows well the hurdles and the problems those with ME face. The lack of understanding and training was voiced by the Dean who knew nothing of ME. Both Mark and Katie; the only 2 that turned up out of 180 in the FB group tells us a lot about how Advocacy and protest and why it is too hard to do.

The other person who attended came from Suffolk, just to take them home so that their PEM was not as severe as it could have been. In all the protests around the world that are organised, none are not well supported or attended by any of the communities they support, the charity or otherwise. This tells us what about our community and who are quick to point out the obvious. Instead of making those points on here, please get in touch with BBC Cambridgshire and ask them to give an interview at mark and Katie's home so they can explain in full the impact of standing for a few minutes had done to their health and that tiredness is not anyway close to the harm they will endure. It is up to all of us to put things right!

 

Tilly i dont really understand the point you're making...

As i said it was very well done to the protesters because i am very aware of how much it will have cost them health wise to turn up. And they did a great job. We all know full well they are not the people responsible for it being referred to as extreme tiredness & my comments (and i assume everyone else's comments) were not directed at them.

People don't turn up to protest because they are too ill. Bed/housebound people cannot turn up to protest, and I'm not 'pointing out the obvious' as if it isnt already known... i am expressing frustration with the 'powers that be'. There is absolutely no point IMHO in wasting energy telling BBC Cambridge because they are simply quoting what it says on the main NHS page and will therefore ignore any comments. But perhaps others disagree and are able.

We are entitled to express our frustration with the way our disease is represented, that isnt a criticism of those valiant PwME who turned up. I have already said well done to those people who managed to attend. I dont understand what you're trying to say.

 

Thats amazing that the Dean did that!

 

It has a link
4 minute interview behind password account BBC https://www.bbc.co.uk/sounds/play/p0gfggws https://www.bbc.co.uk/sounds/play/p0gfggws

 

https://www.youtube.com/watch?v=JtOjx0R6YoU

 

By which they mean very real delusion.

 

A spokesperson from Cambridge's School of Clinical Medicine said it recognised it was a "very real condition" and took its teaching about it "very seriously".

Indeed.
That one’s on the medical school spokesperson, as well as the BBC reporter, indicating that the protest was required.