1. Guest, the 'News in Brief' for the week beginning 4th January 2021 is here.
    Dismiss Notice
  2. Welcome! To read the Core Purpose and Values of our forum, click here.
    Dismiss Notice

Still to open How to make patients who aren't engaged in the patient community aware of studies recruiting?

Discussion in 'Recruitment into current ME/CFS research studies' started by Andy, Nov 16, 2019.

  1. DokaGirl

    DokaGirl Senior Member (Voting Rights)

    Messages:
    1,826
    Likes Received:
    11,185
    I agree, one way is public service announcements via media.
     
    Kitty and Andy like this.
  2. DokaGirl

    DokaGirl Senior Member (Voting Rights)

    Messages:
    1,826
    Likes Received:
    11,185
    Free media - cable TV that may be looking for programs or interviews on their public service section might be another avenue. Don't know if there is such an animal in the UK, but thought it was worth a mention.
     
    Kitty and Andy like this.
  3. JemPD

    JemPD Senior Member (Voting Rights)

    Messages:
    1,625
    Likes Received:
    13,312
    Yes something like The One Show or This Morning would be great for this I think. I don't watch either, but I have seen them a handful of times over the years, & this is just the sort of story that would go down well, especially if they got the doctor that they like - that lady who set up Patient.info... is her name Sarah Jarvis? as well. Perhaps she would be a good person to contact about it, seems reasonably sympathetic & not too sold on the BPS idea?

    I'd avoid that Christensen bloke though as he's been pretty snide on twitter iirc. - cant remember the specifics but I seem to remember thinking he's fallen for the 'activist/harrassment' nonsense.
     
    MEMarge, Kitty, DokaGirl and 3 others like this.
  4. Barry

    Barry Senior Member (Voting Rights)

    Messages:
    6,452
    Likes Received:
    42,705
    Also there is a thread here somewhere about him f'ing and blinding to various people on twitter.
     
    Kitty, DokaGirl, Andy and 1 other person like this.
  5. NelliePledge

    NelliePledge Moderator Staff Member

    Messages:
    7,109
    Likes Received:
    42,189
    Location:
    UK West Midlands
    Hate to say it but probably the Daily Mail would be a good place to get national publicity they have had some reasonable articles about ME in the last 2 years.
     
    Sarah94, MEMarge, Kitty and 2 others like this.
  6. NelliePledge

    NelliePledge Moderator Staff Member

    Messages:
    7,109
    Likes Received:
    42,189
    Location:
    UK West Midlands
    Also Steph McGovern is moving from the BBC morning to do a daytime show on Channel 4.
    She did the interview on BBC about Unrest and appeared open minded would be worth approaching her as to my knowledge channel 4 haven’t engaged with ME as an issue at all.
     
    Sarah94, MEMarge, Kitty and 3 others like this.
  7. Chris Ponting

    Chris Ponting Established Member (Voting Rights)

    Messages:
    58
    Likes Received:
    910
    Interesting! I met with a PR agency last week and they said that the greatest impact would come from telling the stories of people with ME. Far better for the public to be confronted by a person who has lived experience than a scientist who is usually thought of as being dispassionate/objective.
     
  8. Trish

    Trish Moderator Staff Member

    Messages:
    29,456
    Likes Received:
    140,641
    Location:
    UK
    Perhaps a scientist and a patient interviewed together. I have seen that on TV and it works well.
     
    MerryB, Sarah94, MEMarge and 9 others like this.
  9. Simon M

    Simon M Senior Member (Voting Rights)

    Messages:
    344
    Likes Received:
    6,274
    Location:
    UK
    For the general public, I think patients tell the most compelling stories.

    But I think that a lot of patients would like to hear from the researchers running the trials: Are they making a good case for me to give them my sample and data (Have they convinced this is an important study to join)?. At any rate, I would like to hear that, though I’m sure I’d also be influenced by endorsements of the research from charities and patient’s (and would be influenced by knowing they had been given a key role in the study).. So I think both approaches are appropriate.
     
    Last edited: Nov 18, 2019
    Skycloud, Sarah94, MEMarge and 10 others like this.
  10. Sasha

    Sasha Senior Member (Voting Rights)

    Messages:
    3,356
    Likes Received:
    21,276
    Location:
    UK
    I wonder if the PR were thinking in terms of who would have impact on the public, as opposed to who would have impact on potential recruits to the study. As a potential participant, I'd be much more interested in seeing the scientist running the study, ideally with an endorsement from a patient, rather than a patient on their own.

    When there are news reports about a new treatment for any disease, it seems to be pretty much always scientist + patient.
     
    Skycloud, Sarah94, MEMarge and 6 others like this.
  11. DokaGirl

    DokaGirl Senior Member (Voting Rights)

    Messages:
    1,826
    Likes Received:
    11,185

    Good idea, to get a media doctor or doctors on board, who can interview Dr. Ponting, and a pwME, or put forward the info themselves if well versed.
     
    Kitty, JemPD, Andy and 1 other person like this.
  12. DokaGirl

    DokaGirl Senior Member (Voting Rights)

    Messages:
    1,826
    Likes Received:
    11,185

    I agree - a multi-pronged approach: advocacy groups, scientists and pwME.

    The pwME provides the human interest, the scientists provide the background, rationale, and support of the idea. As well, the advocacy groups can provide much from both camps.

    ETA: An example of a media item used for the Health Canada announcement of the recent grant and government policy change re ME (that it's a serious biomedical disease - "take the insult out of the injury"), had of course a combination of scientists, pwME and government officials. This seemed to work very well, and presented a well-rounded format for the public and medical personnel.
     
    Last edited: Nov 18, 2019
    Kitty, NelliePledge, rvallee and 3 others like this.
  13. NelliePledge

    NelliePledge Moderator Staff Member

    Messages:
    7,109
    Likes Received:
    42,189
    Location:
    UK West Midlands
    In terms of getting people who aren’t patients to ‘pass on the message’ to someone they know who has ME/CFS diagnosis i can say that in my experience when I said I had a referral to the hospital and then when I said I was going to see a private specialist in London my family and work colleagues took my diagnosis more seriously. The fact of the research happening (keeping everything crossed for the funding) in the first place will change some perceptions of our illness, the fact of professors going on telly with patients i to publicise it will also have an impact.
     
    Skycloud, Sasha, JemPD and 8 others like this.
  14. strategist

    strategist Senior Member (Voting Rights)

    Messages:
    3,316
    Likes Received:
    33,262
    I agree. It would be nice to have a scientist saying that it's a serious chronic illness and that we know it has a heritable genetic component and that we're now trying to find it.

    Because people don't take ME/CFS seriously. I noticed that my POTS is taken more seriously despite in my case being a lesser problem than ME/CFS.
     
    Kitty, rvallee, NelliePledge and 3 others like this.
  15. It's M.E. Linda

    It's M.E. Linda Senior Member (Voting Rights)

    Messages:
    551
    Likes Received:
    4,241
    I agree with @NelliePledge . I have had far more questions from healthy friends about my health, experiences and the state of biomedical research into M.E.since I have been attending the UK ME/CFS Biobank as a participant.
     
    JemPD, Kitty, rvallee and 4 others like this.
  16. MEMarge

    MEMarge Senior Member (Voting Rights)

    Messages:
    1,779
    Likes Received:
    10,415
    What about linking up with @Gary Burgess? He is a news reporter (from Channel islands), who got ME a few years ago, and did a couple of radio programs, as well as regular podcasts in conjunction with the ME Association.
     
    Skycloud, Sasha, JemPD and 6 others like this.
  17. rvallee

    rvallee Senior Member (Voting Rights)

    Messages:
    5,483
    Likes Received:
    43,647
    Location:
    Canada
    Yes, this is critical.

    The "validation" that sick people need is not for ourselves, it's for everyone else. Modern societies have a social contract in which we defer all medical expertise to a single profession. Included in this contract is the determination of who is sick and who isn't. When medicine says no, that's how it is understood by everyone else.

    There is no such thing as being "sick" but not having a diagnosis, the diagnosis is everything, it is the ticket to get in and the thing that people who are not medical experts understand to mean it is true. All available help is dependent on the precise nature of the diagnosis, without which nothing matters, it's just flatly denied. Even more so that for many diseases most of the extra-medical help is provided by organizations dedicated to that. No diagnosis means no significant support network to fill in the many many gaps in medical services.

    The insistence of many in the medical profession about this validation seeking as an act of self-validation is absurd and ignorant, as if they do not understand the role they play in this social contract, that without their say so not only is all professional help denied but all help, every type and in every context, including the barest accommodations from friends and families.

    The day this understanding will be an integral part of medical training and culture will have enormous impact on the sick and disabled.
     
    andypants, MEMarge, Sarah94 and 3 others like this.
  18. JemPD

    JemPD Senior Member (Voting Rights)

    Messages:
    1,625
    Likes Received:
    13,312
    Precisely.

    When I saw a relative a few yrs ago (for the first time in about 20 yrs - so not since before I was ill) & circmstances required me to reveal I had ME. Regardless of what I told her she treated me as if she wasn't sure whether I was a fuss pot making a big deal out of feeling slightly weary, or a 'highly strung' hypochondriac who was just looking for attention.
    A few months later she saw a piece on the news where Julia Newton was being interviewed…. her whole attitude towards me changed because of that 4 minute interview. She started offering help & suddenly now was able to hear & believe me when I said "i'd love to come but I can't".
    That short TV segment changed my entire relationship with her for the better.

    @Chris Ponting please don't underestimate the difference you could make to the lives of thousands just by you sitting there saying "this is serious enough that we need to study it". The knock on effect will be huge, over & above the recruitment benefits - which I feel sure would be significant - I didn't see that tiny TV interview, but she couldn't wait to tell me about it next time she saw me. I'm certain she'd have been on the phone that very night had it been a call for study participants.

    Wow this could be so positive, I do hope it gets funded. Is there anything at all we can do to influence that? I mean do they care AT ALL that patients are behind it?
     
  19. JemPD

    JemPD Senior Member (Voting Rights)

    Messages:
    1,625
    Likes Received:
    13,312
    Ooo, that's a great idea! @Gary Burgess would you be interested? If you were well enough of course.
     
    MEMarge, Andy and Trish like this.
  20. Chris Ponting

    Chris Ponting Established Member (Voting Rights)

    Messages:
    58
    Likes Received:
    910
    Thank you so much for your comments. As to your last comment/question, the MRC and NIHR are very serious that pwME/patients are front-and-centre of this project proposal. The NIHR correctly insists that we have a patient-public involvement strand running through the project where, importantly, they define "public involvement in research as research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them". https://www.invo.org.uk/posttyperesource/what-is-public-involvement-in-research/
     

Share This Page