Cambridge ME protest calls for better medical training across UK

Lou B Lou said:
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.
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i know i mean how can this
Also called chronic fatigue syndrome, ME can affect anyone and its main symptom is extreme tiredness.
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and this
"The most severe patients can become malnourished because they are too weak to chew or swallow food, yet they receive no medical help at all," she added.
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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 :banghead::banghead::banghead:
 
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.
 
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JemPD said:
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 :banghead::banghead::banghead:
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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'?!!!
 
Lou B Lou said:
BUT we must get rid of the word "Tiredness" and have it removed from ALL reporting on ME.
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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;
How our service can help you
ME/CFS is a debilitating, chronic multi-system illness. Although a definitive cause for the condition is still unknown, current research suggests that the autonomic nervous system, neuroendocrine system, and the immune system are the body systems likely to be involved in the condition that is ME/CFS.

Symptoms include debilitating fatigue, post exertional malaise, sleep disturbances and cognitive dysfunction such as issues with memory and concentration and word finding difficulties. There are also other symptoms that are commonly experienced by people living with ME/CFS. The pattern and intensity of symptoms vary from person to person and symptoms are unpredictable in their nature.

ME/CFS service

Referrals are triaged by specialist clinicians in the service and if appropriate, patients are invited to attend an initial assessment with a specialist clinician. At the appointment, patients are assessed, and confirmation of diagnosis is made based on the preliminary diagnosis from the referring GP.

Information and advice for self-management of the condition is person-centred delivered through education sessions, therapy intervention and self-help literature. Areas covered (amongst others) include education regarding symptomology of ME/CFS, understanding energy, activity management, relaxation, sleep, stress, and emotional wellbeing.

Clinical and therapy appointments are offered virtually (via video link or telephone). Face to face appointments can be offered if this is preferred at clinics in Peterborough (Botolph Bridge Community Health Centre), Huntingdon (Hinchingbrooke Hospital) and Cambridge (Brookfield Hospital).

The team

The ME/CFS service consists of specialist clinicians who have a wide range of knowledge, skills, and experience in ME/CFS and fatigue management. As well as establishing a supportive and collaborative relationship with the person living with ME/CFS, and their family/carers the service also provides advice, support, and training to other health professionals. The team attends regular training events to update their knowledge, skills, and research within this specialist area and regularly network with other ME/CFS services in the East Midlands region.
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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.
 
JemPD said:
oh but if the people protesting happen to see this...

very well done! :thumbup:
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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 said:
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!
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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.
 
Mij said:
Agree. They should also use terms such as debilitating chronic illness that destroys lives instead of 'condition' in their titles.
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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.
 
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