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

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.
 
Trish said:
Get Chris Ponting interviewed on TV news and chat shows.
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Barry said:
Now that is a very neat idea! We may not be able to get the media interested in ME itself, but the media is perhaps more likely to take a serious interest in one of the largest genome wide association studies ever undertaken in the UK; it becomes a human story. If that could happen then Chris Ponting would inevitably have the opportunity to talk about ME itself as well.
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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.
 
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.
 
Trish said:
Get Chris Ponting interviewed on TV news and chat shows.
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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.
 
Trish said:
Perhaps a scientist and a patient interviewed together. I have seen that on TV and it works well.
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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.
 
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Chris Ponting said:
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.
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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.
 
JemPD said:
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.
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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.
 
Simon M said:
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.
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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.
 
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Chris Ponting said:
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.
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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.
 
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.
 
NelliePledge said:
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.
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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.
 
NelliePledge said:
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.
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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.
 
NelliePledge said:
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.
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rvallee said:
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.
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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?
 
JemPD said:
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?
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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/
 
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