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

Ravn said:
Yes, I picked up on that one, too. Some years ago I participated in a study on face blindness and turns out I am. Just mildly, the least blind of the blind, but definitely face blind. I'd never connected it to ME though. Of course it may have nothing to do with ME. Amongst the millions of pwME there must be handful of face blind people just by coincidence, face blindness is quite common. But if there's a significant number of people who definitely were not face blind before ME and now are, that could be more relevant. Face blindness is a cognitive dysfunction which can be measured. Unfortunately I've had ME too long to remember how I remembered faces before ME.
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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.
 
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.
 
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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.
 
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.

Natalie said:
I've just made some changes - Exposure to sound and light and sensory stimuli can be excruciating and does not improve with exposure. It can 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 ME/CFS, especially those with severe, very severe levels of illness. It is one of the most difficult aspects of the disease for professionals/caregivers to understand and 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.
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Just ideas, wont be at all offended if you ignore.

Thanks for all your amazing work on this Natalie you're a total hero :emoji_clap:
 
JemPD said:
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 :emoji_clap:
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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.
 
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.
 
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
 
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