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

I'm editing the Introductory video at the moment - starting from scratch again, now I have some more really good material to draw on. The main problem is keeping it short enough! I will probably contact CS again, but for now I am not working on a section where his input would be most useful. Josh is taking paternity leave - a daughter born on Sunday night - so we won't be filming again for a bit and when we do I have quite few visits planned already. I think I have this autumn pretty much full already!

 

Thank you for taking the time to transcribe the videos. As I mentioned in a post I have transcripts of the videos already, which I try to keep up-to-date was we edit and make changes. I can't check these at the moment - just become a Granny and editing the Introductory video while I have it all in my head. I would prefer the transcripts to just stay this forum and not be put up in other public places - Please. Thank you.

 

I think that when the film came out - 2011 - people really didn't know so much about very, severe ME and the abuse of patients. The film was really shocking, too shocking for people to want to show it much. I certainly had no idea how bad things were before I did the interviews. I didn't chose examples of abuse intentionally!

 

Very many congratulations to you Granny @Natalie ! Please pass my very best wishes to all the Family from me, Hubby and Greyhound “Happy Hound” (HH).

Perhaps CS will be available the next time you ask....I will keep everything crossed.

Edit: names

 

This is good news @NelliePledge.

Now if only they could get the link onto the NHS site!

I have queried before the use (by the NHS) of a short video titled
"Chronic Fatigue Syndrome - watch an expert describe the symptoms,diagnosis and treatments for..."
with a fairly old video of Charles Shepherd.

I think this sends out all the wrong messages.

Firstly, the singular prominent use of CFS.
Secondly, given the 'advice' included on the NHS site re diagnosis and treatment, surely this is completely at odds with everything the MEA is supposedly fighting against on behalf of ME patients.
And lastly, how can the NHS say on the one hand that Charles Shepherd is an expert and then on the other promote the theories and treatments (ie GET/CBT) of the likes of Sharpe,Chalder et al.

I really don't think that the MEA should continue to allow that video to be used without certain changes being made to the advice contained on the site as it implies that they endorse the treatments the NHS recommend.

see:
https://www.nhs.uk/conditions/chronic-fatigue-syndrome-cfs/

eta:
did a transcript

 

It’s a while since I watched it but I think one needs to be careful what one wishes for. It could be replaced by a psychologist/physio/psychiatrist/other clinic employee saying annoying stuff.

 

MEA posted a link and a quote on their page. I would not say it was exact promoted as the excellent resource it is. But others might disagree.

 

to be honest I'd prefer to see someone like Trudie Chalder on there spouting about fear avoidance and deconditioning and the rest of their rubbish. Then people would really see what's behind the treatments on offer (ie GET/CBT) rather than the MEA apparently giving it credence.
(I've done a transcript so you can see what he says and how it can easily be seen as justification for GET/CBT).

 

Morning @Natalie

Apologies, I have only just seen the alert and wasn't aware of previous conversations between you and Dr Shepherd. We did feature on social media yesterday a link to your website and the new videos but I would like to try and do more to promote the fantastic efforts you and the team are making if at all possible.

Would you like to email me and we can discuss how best the MEA might help?

russell.fleming@meassociation.org.uk

Many thanks

Russell

 

These two videos are also available to view on the Workwell website, https://workwellfoundation.org/research-latest-news/

 

@Natalie I can relate to what you say:


I developed ME 35 years ago. Despite being bedridden a lot of the time (and still need lots of couch time), it wasn't until the 23 year mark for me that I had a glimpse of how bad ME can get. I was consulting a ME specialist when ambulance attendants wheeled in a very ashen woman for the doctor to see. It was shocking.

From early on I subscribed to newsletters from various groups, and read what books I could find on the topic, but somehow, missed the fact that people could be 100% bedridden, need tube feeding, be very near death, or die from ME. I don't know if I just missed this in the literature, or if it was not there. Was it de-emphasized in order that people not become discouraged?

I have no way of knowing at this point.

Perhaps I was blinded by "authorities'" assurances that I would recover in 1 to 3 years - the official Canadian information at the time.

This information was of course wildly incorrect for many, if not most.

It is crucial that the severity of ME be made clear.

Thank you to all who are doing this.


@Natalie, thank you very much for these very clear and concise videos. They will do much to raise awareness and educate. I look forward to more.

 

Now mentioned on the ME Research UK website -

ME Research UK: Dialogues for ME/CFS

http://www.meresearch.org.uk/information/dialogues/

This is a collection of videos created by Natalie Boulton, funded by an award from the Wellcome Public Engagement Fund. The full series will cover different aspects of ME/CFS from a variety of perspectives, and include interviews with, and input from, doctors, researchers, patients, carers and advocates. There is more information about the project at Voices from the Shadows…

 

Hi @lunarainbows , I now have a better idea of when the event at the LSHTM will be. We can't get the videos all ready for this May's ME Awareness week, but the plan is to hold the event as near to ME Awareness 2021. In the meantime we will get the videos online as soon as each is finished, so they can be used. Do please lets be in contact again so I can fill you in on preparations nearer the time. It would be great to have your help. Thanks.

 

Yes, as Chris Snell pointed out, Aerobic exercise for a person with ME is not aerobic! - "For many ME/CFS patients aerobic exercise is not aerobic, so if you’re using a – for example a 60 % of their peak heart rate, as a measure of aerobic energy expenditure, that’s unlikely to be accurate, so unless you actually know where the anaerobic threshold is, even a very, very low intensity programme is very likely, for a person with ME /CFS, to be vigorous to high intensity, ie above their anaerobic threshold. So instead of a leisurely jog, it’s a 100 meter flat out sprint!" Chris Snell, from our interview with him last Feb.

 

I just re-noticed the earlier posts about the MEA and Charles Shepherd and wanted to say that we had a very good and long session interviewing Charles last month - with different degrees of input intended for various videos under construction. I've also had some chats with Russel, who I already knew from the old CMRC PAG. He's been very encouraging and will be putting the GET videos, and some others when they are finished, on the MEA website. I am very grateful for their input and help.

 

Hi Natalie thank you, OK shall I contact you in January 2021, or would you prefer a sooner or later date?

I have spoken to my boyfriend about it. He is very happy to help and happy to hear about this project. He says he could help with posters, raising awareness of the event etc and speak to others.

 

@lunarainbows , Sorry I'm a bit slow at spotting things... That would be great - perhaps nearer Easter 2021 would be OK.

 

The PEM videos will be ready to go up online soon and I am working on the 'Introduction to ME/CFS' which has been a long time in the making. I would be really glad of having more photos to use in the editing. It contains a fair amount of Jo Edwards, and Luis, as well as many others - Eliana & Caroline, Charles, S. Nina M, Willy Weir, Nigel S., David Tuller, David Systrom, Chris Snell, Mark VN.... I need some pics of PWME, whether lying down or engaged in activities - or even paired - activities and consequences! It really helps to have a choice or photos to draw on, with different degrees of illness and ages. They need to be landscape format. They will not have names attached in the video.

The other thing I need is a graph showing research funding, probably a recent UK one would be best - I wondered if anyone can point me to one we can remake? If anyone can help me out with photos you can contact me using the Voices contact form http://voicesfromtheshadowsfilm.co.uk/contact/ which comes to me. Then I can send my email address to send any photos to. Thank you.