Dialogues for a neglected illness - videos on experiences of people with ME (funded by Wellcome Foundation)

https://twitter.com/user/status/1335667607119278081

 

I'm pretty certain both contributors didn't have it before ME. I think John said he'd had a good memory for names and faces and Anna certainly didn't have it before, and probably only after a major relapse.

 

That's good to know. Thanks.

 

I was looking for something to go on the website beside the Hypersensitivies video. I don't think there is much that can be said about about the probably causes of this, but I notice posts by @JemPD and @lunarainbows about hypersensitivity and wondered what you think about this passage, which I have taken from your comments......
Exposure to sound and light and sensory stimuli, can be excruciating and cause physical deterioration and loss of function, which could even become permanent. It is perhaps the most crucial aspect for doctors and other professionals to take into account, when planning care and treatment for patients with severe and very severe ME/CFS. It is one of the most difficult aspects of the disease for patients to cope with. It not only causes social isolation, but can make access to healthcare very dangerous. I need to decide by tomorrow...Tuesday.

I've just made some changes - Exposure to sound and light and sensory stimuli can be excruciating and cause physical deterioration and loss of function, which could even become permanent. It is perhaps the most crucial aspect for doctors and other professionals to take into account, when planning care and treatment for patients with severe and very severe ME/CFS, and even moderate illness. It is one of the most difficult aspects of the disease for patients to cope with. It not only causes social isolation, but can make access to healthcare very dangerous and makes access to social support very difficult.

 

My suggested edit. Feel free to use, or not, as you wish.

Exposure to sound and light and sensory stimuli can be excruciating, causing physical deterioration and loss of function which could even become permanent. It is perhaps the most crucial aspect for doctors and other professionals to take into account, when planning care and treatment for patients with severe and very severe ME/CFS, and should be a consideration for those patients with more moderate illness. It is one of the most difficult aspects of the disease for patients to cope with, causing not only social isolation, but making access to healthcare and to social support very difficult.

 

Also sensitivity to touch? Hard to avoid in a medical setting but at least avoid unnecessary touch like that nurse kindly patting your arm all the time, well-meaning but...

 

MArvellous as it is @Natalie but just a suggested change (in blue)
As i'm sure you're only too well aware, many well meaning Drs/care givers think they understand but dont, and think they can help you by increasing your exposure & 'getting you used to it'. When i was mild - enough to ignore my ME & still working full time, being exposed to too much complex sensory input used to make me very ill so i think it's not only moderate, it's across the board if you have that symptom, obviously essential in mod> v severe but in view of the fact most docs thing everyone is affected mild-moderate i shy away from making it all about being severe, & possibly a consideration in the moderate - better for them to provide when it not needed than vice versa.

Just ideas, wont be at all offended if you ignore.

Thanks for all your amazing work on this Natalie you're a total hero

 

Thanks for the suggestions. I've actually covered the 'gradually increasing exposure' myth in the video @JemPD . I've got a bit more time to think exactly what to write for the website, so I'll have another think about it all. @Ravn I do get that and I'll check the video too, to make sure all these aspects are covered. I think there's a pretty comprehensive list. Thanks.

 

https://twitter.com/user/status/1336365999893966849

https://twitter.com/user/status/1336369708636000257

https://twitter.com/user/status/1336371150994149378

 

fantastic Natalie thnks

 

The last two of the Patients' Accounts of Symptoms are now up! Pain and Hypersensitivity. Thanks to every one who contributed to all these videos. I think they give quite a good sense of the disease, considering how limited we were by covid restrictions. https://www.dialogues-mecfs.co.uk/films/patients-experiences/

 

And Hypersensitivity https://www.dialogues-mecfs.co.uk/films/patients-experiences/

 

Thank you very much to everyone who has been posting, tweeting and linking to the videos so effectively, especially Tom and Linda. Please keep it up! Thank you. It will all go quiet now for quite a while, we try to get to grips with the wider context video/film. I undated the Home page and the GET page too.... still a bit of tidying up to do, especially if Josh can teach me how to adjust the website myself! over Christmas. the videos are being embedded on the Norwegian charity website ME Foreningen and there are other plans in the pipeline too.

 

https://twitter.com/user/status/1337840715389341701

 

https://twitter.com/user/status/1337861569225641988

https://twitter.com/user/status/1338141787924422661

https://twitter.com/user/status/1338179552032460806

 

https://twitter.com/user/status/1338609953960062980

 

https://twitter.com/user/status/1338924134936563715

https://twitter.com/user/status/1339459813676371969

https://twitter.com/user/status/1339653974107033601

 

https://twitter.com/user/status/1340306999599312897

 

Code:

https://twitter.com/DialoguesMECFS/status/1350819666852196356

https://twitter.com/user/status/1350819666852196356

 

I'm collecting together a list of charities and organisation who have embedded or linked to the Dialogues project and videos... to send to Wellcome. If you have come across other significant sites, please could you let me know. Thanks. I need to demonstrate that the project so far has been found to be valuable....

ME Research UK https://www.meresearch.org.uk/research/other-resources/dialogues/
Breakthrough Autumn magazine ‘Breakthrough’ magazine.

ME Association - https://meassociation.org.uk/dialogues/

Workwell Foundation US https://workwellfoundation.org/educational-videos/

Action for ME “links to the Dialogues films on our information pages on symptoms, GET, pacing and severe M.E., and on our diagnosis and symptom-management pages for healthcare professionals.”

Study PRN - continuing professional development courses for UK healthcare providers. Includes links to videos in resources.
https://www.studyprn.com/p/chronic-fatigue-syndrome

Healthcare Special Issue - ‘Severe ME’
https://www.mdpi.com/journal/healthcare/special_issues/me_cfs_issue
The ‘Summary video’ for the Special Issue is "Severe & Very Severe ME / CFS", produced by Natalie Boulton.

US Clinicians Collaborative website
https://mecfscliniciancoalition.org/medical-education/#other-educational-resources
VIDEOS:' POST-EXERTIONAL MALAISE' & 'SEVERE ME/CFS'

Physios for ME https://www.physiosforme.com/videos

Long Covid Physio https://longcovid.physio/post-exertion-malaise

Health Rising https://www.healthrising.org/blog/2...d-exercise-therapy-the-pace-trial-and-me-cfs/

ME/CFS South Australia https://mecfssa.org.au/resources/continuing-professional-development

https://mecfssa.org.au/resources/patients-accounts-of-symptoms-2020

ME Trust https://metrust.org.uk/useful-links/

Phoenix Rising https://forums.phoenixrising.me/threads/dialogues-for-a-neglected-illness.82235/

ME Awareness New Zealand https://m.e.awareness.nz/guidance-on-pem-for-clinicians