Discussion in 'Advocacy Projects and Campaigns' started by Andy, Oct 15, 2018.
Natalie Boulton, one half of the team behind this project, has been in touch and a few more participants are needed.
Are you male, a donor of samples to the UK ME/CFS Biobank, and willing to appear in the 'Dialogues for a Neglected Illness' video project?
Ideally located approximately within a two and a half hours car drive from Bristol, you would be filmed briefly describing what are the most important/impactful ME symptoms to you.
Natalie has explained to me that, 'The purpose of this section of the project, looking at the most important symptoms of ME/CFS as described by patients, is to help GPs recognise the illness and to also give researchers a better idea about the illness for which they have, or may want to access, biobank samples. Many researchers never get to meet patients.’
Natalie also says, 'Before any videos are made public, contributors are asked to confirm that they feel accurately represented and are happy to be included in the videos.'
Anybody interested in volunteering for this please contact Caroline Kingdon, from the Biobank itself, whose email address can be found here, https://www.lshtm.ac.uk/aboutus/people/kingdon.caroline - it’s important to highlight again that you must be, or have been, a Biobank sample donor.
Other sections of the project are coming along well, Natalie reports:
'We have drafts of several videos -
Introductory video, largely with Jo Edwards, members of the CURE ME team and Dr Weir
PEM - the Workwell team
GET - the Workwell team with Brian Hughes and Jo Edwards on PACE
We’ve also collected video material for videos with -
Biobank Patients - 4 videoed already and 3 more provisionally arranged for when the patients feel well enough and both Josh and I are available. This section will probably concentrate on key symptoms/types of symptom rather than case histories, since that could risk making patients rather exposed. There will not be very much from each of about 9 patients, as the videos for GPs need to be kept short. I need one or two men to help with this, as all the completed patient interviews and two of the pending ones involve women.
Patient advocates - Two interviews with citizen scientists have already been videoed and there are several other advocates who I have contacted and who are glad to help - both men and women.
The history of and social/political context for ME and CFS. This will be a longer video - or couple of videos. This is not my priority at the moment, but we already have some very good input and more filming is planned shortly.
Severe ME is underway and this is my priority at the moment.
We have some preliminary material for the diagnosis and management videos, but I intend to rework this in the autumn with additional input from another ME/CFS consultant.'
Would prefer using "disease" over "illness." Thankful for their efforts, regardless.
This is a very exciting project.
I was videoed for this last month. Natalie and Josh were very considerate.
I agree, Natalie and Josh are very considerate. Moreover Josh agreed to edit out all “ummmm’s”.
Yes, I realise this has become an issue. The tittle is too much of a mouthful anyway and I was thinking of changing it to something much shorter before the videos go online. It was a last minute addition before I got the application in a year ago and I had absolutely no idea it would actually be accepted!!! - quite the opposite. I only went on to finish it because I had spent so much time on it already.
@Natalie would you like the request to go on twitter (linked to U.K. ME/CFS Biobank) to seek male volunteers or ‘hold fire’ at the moment? Presume Caroline is searching for you.
I think I should run it past Caroline first as she is selecting and contacting patients for the project. Thanks Linda.
It sounds fantastic, @Natalie. Thank you so much for your work on this.
I thought she would be searching for volunteers for you @Natalie . Just shout if you need anything!
Yes, disease may be a more appropriate term, particularly since a Michael Sharpe and one other (IIRC) paper/(report?)recently summarised in the BMJ involved a strong assertion that ME/CFS is 'an illness without disease', which they define as a subjective experience of illness that is not supported by any objective evidence of physical pathology (!!). I responded saying that there is now plenty of evidence of physical pathology, so that descriptor is fallacious, but my comment was monitored and 'disappeared'.
Hi @Elizabeth Edwards, welcome to the forum!
The Sharpe article you refer to is discussed here:
Michael Sharpe: Mind, Medicine and Morals: A Tale of Two Illnesses (2019) BMJ blog
The first two short videos for "Dialogues for a neglected illness " -" Graded Exercise Therapy for ME/CFS" - in two parts - is now available to watch http://voicesfromtheshadowsfilm.co.uk/dialogues-project/ Many thanks to Graham McPhee, John Peters and Tom Kindlon for help with sorting out the edit and graphs to make it accurate and, of course, to the contributors - Brian Hughes, Jo Edwards and members of the Workwell team.
Wow. I have just watched both videos. They are brilliant.
The first is about the harms of GET with the Workwell people and someone from the CDC. The second is about the PACE trial with Profs @Brian Hughes and @Jonathan Edwards. Thank you both, and thanks to everyone involved in making them. So professional.
I hope there will be a transcript for those unable to watch.
Will they be shown to the NICE guideline committee? I hope so.
@adambeyoncelowe, @Keela Too, @saranbonser.
@PhysiosforME these videos should be very useful for you in spreading the word among professionals.
Maybe busy GPS could be persuaded to watch these. Very good. Thank you all concerned.
Great videos. Graded exercise concisely explained. Perhaps a good resource for @PhysiosforME
ETA drafted am, posted pm, crossposted with @Trish
Separate names with a comma.