Get the latest update on the world's largest genetic study into ME/CFS, and find out why patients and their carers are at the heart of our study. We also answer your questions.
Read the transcript or listen to the audio: https://www.decodeme.org.uk/webinar-recording-transcript-why-patient-involvement-is-crucial/
Register your interest in taking part in the study from home: https://www.decodeme.org.uk/
TIMESTAMPS
Presentations:
00:00 Welcome & introduction from Sonya Chowdhury
02:34 Chris Ponting: study update presentation (what's been happening and apology)
09:51 Sian Leary: how involving patients improves research
37:26 Addition of up to 5,000 people with ME/CFS after having Covid-19.
Questions and answers by topic:
Taking part questions:
21:51 What is a spit kit?
25:21 Do I have to travel to a clinic to take part?
23:08 I haven't received an invite. / What's the recruitment process?
42:23 I've already signed up. Do I need to sign up again?
44:43 Can you give an idea of who will and will not be eligible for the study?
50:37 Do I need a letter confirming my diagnosis?
Can I take part if... ? Questions.
47:42 Can I take part if I have co-morbidities (multiple conditions, e.g. fibromyalgia, POTS, Sjogren's etc?
44:18 I have a Chronic Fatigue Syndrome diagnosis, not ME, can I take part?
37:26 Can I take part if I have Long Covid?
48:50 I've recovered pretty well, it is useful for me to take part in the study?
54:25 Is there an age cut off for the study?
50:50 Can I take part after Covid-19 vaccination?
Study progress:
33:06 Is there a diagram showing where we are in the study progress?
33:54 How long will it take before the information is analyzed and have you any practical application?
Patient and Public Involvement (PPI):
50:21 What does PPI mean?
28:30 How do you record how people with ME are being involved in the study
and decisions that this impacts?
30:35 What advice would you give other researchers on working with people with lived experience?
31:53 Have you asked patients what other research should be done into ME/CFS?
Study design and data privacy:
46:45 What exactly are you looking for with the saliva samples?
26:10 How do you ensure participants have ME/CFS?
51:28 Questions around data privacy and DNA samples going astray.
55:01 How can we trust that the outcome will be fair, honest and not manipulated - as in the GET trials?
49:16 Will full details of the research design and intended analysis be released in advance?
57:24 How are you making sure the study isn't duplicating work already
being done in the US and others?
Other questions on the study and ME/CFS:
43:04 Will the genetic analysis indicate a treatment plan?
35:17 Will the study help find a diagnostic test for ME/CFS?
45:44 Is data from families with many people with ME useful to the study?
51:08 How long, roughly, will the study take?
56:13 Which countries are involved in the study?
50:50 Will Covid-19 vaccination affect your results?
41:58 Does ME develop after a person has a viral infection?
50:50 Will Covid-19 vaccination affect your results?
Register your interest in taking part in the study from home: https://www.decodeme.org.uk/
0 Comments