CBT for CFS Therapist Manual PAEDIATRIC CFS TEAM, ROYAL UNITED HOSPITAL, BATH, UK Loades, M.E. & Starbuck, J. | 2020

All you have to do is set goals like this:
* To get back to competing with my swimming team by next summer
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And of course meet them, don't be a girly about it, get going and stop whining and before you know it, you will have left your illness behind you.

By next summer, mind you - by that time, you'd better have shaken yourself out of all this silliness. Enough is enough. now get on with it...
 
Woolie said:
All you have to do is set goals like this:

And of course meet them, don't be a girly about it, get going and stop whining and before you know it, you will have left your illness behind you.

By next summer, mind you - by that time, you'd better have shaken yourself out of all this silliness. Enough is enough. now get on with it...
Click to expand...
Nothing like a SMART target then?

The exasperation is that this continues , CF conflation causes real harm, and mental health impacts that were avoidable are built in.
Harm has many manifestations - to have this foisted on you at a young age has potentially serious repercussions throughout life, outwith living with a fluctuating illness.
 
Woolie said:
All you have to do is set goals like this:

And of course meet them, don't be a girly about it, get going and stop whining and before you know it, you will have left your illness behind you.

By next summer, mind you - by that time, you'd better have shaken yourself out of all this silliness. Enough is enough. now get on with it...
Click to expand...
Yea recall a UK charity which used to run stories "Miss X [glamourous picture provide] completed her degree despite having having ME--" so, those of us with children unable to complete their degree due to ill health, disabling fatigue --- well unlike the featured Miss X they obviously weren't motivated.
 
FMMM1 said:
Yea recall a UK charity which used to run stories "Miss X [glamourous picture provide] completed her degree despite having having ME--" so, those of us with children unable to complete their degree due to ill health, disabling fatigue --- well unlike the featured Miss X they obviously weren't motivated.
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Miss X usually had something to sell, by the time you reached the bottom of those articles there was always a modelling agency to contact or a fund to donate to or a book to buy or a course to go on.
 
It really is a thing. Here's a burlesque dancer with plans for a modelling career and a link to her facebook page at the end of the article:

https://www.mirror.co.uk/news/real-life-stories/couldnt-out-bed-eight-months-6438056

Here's a former "party girl and burlesque dancer [another one!] with ME". For 750 a month she'll sort out your facebook ads for you ("work with me" tab):

https://www.laura-moore.co.uk/laura-bennett-founder-of-mama-massive/

Here's someone with a modelling career and ME, with a link to her youtube ad for shampoo at the bottom of the article:

https://www.dailymail.co.uk/tvshowb...e-chronic-fatigue-syndrome-teenage-years.html

Here's a kickboxer with ME:

https://www.thesun.co.uk/sport/5810342/ruqsana-begum-boxing-kickboxing-hollywood/

I don't even click on articles like this any more, I've got the general idea. After the first couple of sentences you can just go to the bottom of the page to see what they really want the publicity for, ME is usually just a vehicle to get publicity for something else.

I have just added "avoid burlesque dancing" to my pacing routine. Someone should do a study.
 
FMMM1 said:
Yea recall a UK charity which used to run stories "Miss X [glamourous picture provide] completed her degree despite having having ME--" so, those of us with children unable to complete their degree due to ill health, disabling fatigue --- well unlike the featured Miss X they obviously weren't motivated.
Click to expand...

I had a conversation recently with someone whose daughter "recovered" from ME. the daughter contracted glandular fever in her late teens and it took over a year of being virtually bedbound, followed by several years of being very careful.

This girl was very lucky and, rather than be put off by a tentative diagnosis of possible depression, her parents kept looking until they found a doctor who helped. Decades on and a mother herself now, she now leads a virtually normal life but was left with some health complications. Her Mum doesn't think she's ever really been 100% since.

The daughter doesn't ever like discussing ME and shuts down the conversation whenever it comes up. Her Mum reckoned that is mainly down to the "inspirational" articles she read in ME charity magazines. She told her mother she didn't want to even see the magazines anymore. She didn't want to view it as a "gift", a "growth" opportunity or an "enriching " experience.

I wonder how many other people who recovered enough to lead an almost normal life were put off by such articles? Who were given the false impression by charities that these were typical views and attitudes of ME patients. Perhaps who were left wondering if the ones who recovered were like them - wanting to get better, not navel gaze about being more "enlightened".

Without those articles published by ME charities in their magazines, would we have more people who had recovered supporting us rather than turning their backs?

The lady I spoke to was surprised to find her daughter's attitude towards those articles wasn't unusual at all.
 
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