Science Media Centre with Holgate/Crawley/McCrone - more anti-patient prejudice? (FITNET)

[Yogi]

Something also suspicious about Liz Horgan is that she was struck down with "CFS/ME" at 25 when she was at full time work.

http://www.ayme.org.uk/news/-/asset...ase-local-girl-sparks-chain-reaction-for-m-e-

However she is now back at full time work at 26. So she only had ME for one year.

She probably had some post viral thing or chronic fatigue. Not ME/CFS.

I thought she was a child member of AYME in the past. However if she had it at 25 and recovered at 26 then what is she doing with AYME which is for those under 18.?

Edit: I see that AYME accepts people up to 26 so she scrapes in under the limit.

 

[Wildcat]

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I agree with Yogi (though not with the brainless bimbo part). With choosing to go public in such a way there is a responsibility

The person is not a minor, she chose to go public, she wasn't quoted against her will. Her endorsement has huge implications for all of us who have friends and relations, doctors, sickness benefit advisors, etc who put more store in something they read or hear on the BBC than the facts we tell them.

I personally no longer expect to see an end to the disinformation (and highly publicised and repeated slurs against the patients who challenge the disinformation) within my lifetime. 20 years ago I did expect that.
.

 

[Esther12]

Agreed if she just kept herself to the blog.

But as I said in my previous post she is not just doing that but has gone on a media blitz with the EC and the FITNET trial on mainstream BBC news with worldwide transmission. Given all the well documented problems she should be aware of the issues and that patients are nearly unanimously against CBT/GET.

There's no way that you can say that a random patient should be aware of the issues with Crawley, CBT/GET and FITNET!

Many of those who investigate the condition are... but so many patients just think that they can trust their doctors and never even bother to do a google search!

Stewart says she only got diagnosed 18 months ago. I cringe to think of how trusting of medical authority I was at that point in my illness. She doesn't have a responsibility to properly investigate this stuff when just being asked to share her personal story. The journalists, researchers and charity representatives are quite different, and do have a responsibility.

 

[Wildcat]

.
AYME age range is up to age 26 I think. Isn't there a kind of post-AYME group for grown up AYME members.
.

 

[Esther12]

Something also suspicious about Liz Horgan is that she was struck down with "CFS/ME" at 25 when she was at full time work.

http://www.ayme.org.uk/news/-/asset...ase-local-girl-sparks-chain-reaction-for-m-e-

However she is now back at full time work at 26. So she only had ME for one year.

She probably had some post viral thing or chronic fatigue. Not ME/CFS.

I thought she was a child member of AYME in the past. However if she had it at 25 and recovered at 26 then what is she doing with AYME which is for those under 18.?????

I don't think that's something suspicious about Liz, so much as a reflection of the way Crawley, the SMC, etc will want to use anecdotes. I really think it's important to only criticise those who deserve criticism. Particularly when there's so much prejudice about any sort of patient activism, we need to make sure we don't act unreasonably.

 

[Wildcat]

.
She ran a blog since July 2015 - a google search would not be an impossibility. Is it really likely that a person who has an online blog does not do google searches?
.

 

[Yogi]

I don't think that's something suspicious about Liz, so much as a reflection of the way Crawley, the SMC, etc will want to use anecdotes. I really think it's important to only criticise those who deserve criticism. Particularly when there's so much prejudice about any sort of patient activism, we need to make sure we don't act unreasonably.

AYME accepts to age 26. i have changed the post.

 

[Yogi]

There's no way that you can say that a random patient should be aware of the issues with Crawley, CBT/GET and FITNET!

Many of those who investigate the condition are... but so many patients just think that they can trust their doctors and never even bother to do a google search!

Stewart says she only got diagnosed 18 months ago. I cringe to think of how trusting of medical authority I was at that point in my illness. She doesn't have a responsibility to properly investigate this stuff when just being asked to share her personal story. The journalists, researchers and charity representatives are quite different, and do have a responsibility.

She is not just a random patient pulled off the street or the hospital. She has history with AYME and Mary Jane Willows. Are you saying all the PACE controversy just passed her by?

She went on mainstream national media campaign for FITNET. Therefore it is fair criticism given she went public. Again I would not say this is the case if she only publicised this on her own blogs, twitters etc. However she is part of a FITNET BPS campaign against the PACE backlash. Check out Simon Wessely retweeting her interview.

 

[Esther12]

.
She ran a blog since July 2015 - a google search would not be an impossibility. Is it really likely that a person who has an online blog does not do google searches?
.

I'm not saying it's impossible for her to have read all about the details of PACE, Crawley, etc. I'm saying that very, very many patients will not have done so, and that it's not fair to slag them off for this. I didn't bother reading much patient activism material for the first 10 years or so of being ill. I had other things I wanted to do. I don't think that meant it would have been wrong for me to tell others about my personal experiences.

 

[Esther12]

She is not just a random patient pulled off the street or the hospital. She has history with AYME and Mary Jane Willows. Are you saying all the PACE controversy just passed her by?

She went on mainstream national media campaign for FITNET. Therefore it is fair criticism given she went public. Again I would not say this is the case if she only publicised this on her own blogs, twitters etc. However she is part of a FITNET BPS campaign against the PACE backlash. Check out Simon Wessely retweeting her interview.

She went public about her personal interpretation of her experiences. It's not fair to expect a patient to fully inform themselves of all the science before they do this (although it would be great if they did).

The way her anecdote is being used is bad. I blame AYME, Crawley and the journalists for this.

 

[Valentijn]

She really shouldn't be considered 'fair game' - she's a fairly new fellow sufferer who quite understandably doesn't fully appreciate the controversy around CBT or the damage it can do.

I think if someone is going to speak up and present herself as a typical case, she has a duty to understand her illness and the treatments in question. And it would be rather daft for her or anyone else to think that her anecdotal evidence somehow trumps the scientific evidence (PACE, Dutch FITNET, Wiborg actometers) that show these treatments have no effect.

I don't think she should be blamed or accused of anything. But I'm disappointed that she's so thrilled to get some attention without offering anything intelligent or of any real value. Maybe it's pretty normal for a new patient to be a bit clueless, but I expect more from people who are putting themselves forth for a media campaign.

She's being irresponsible, even if she has good intentions, and it risks having a negative impact on the public perception of ME/CFS. That's going to annoy a lot of people, especially while she's so oblivious and basking in the limelight.

 

[Barry53]

I'm not saying it's impossible for her to have read all about the details of PACE, Crawley, etc. I'm saying that very, very many patients will not have done so, and that it's not fair to slag them off for this. I didn't bother reading much patient activism material for the first 10 years or so of being ill. I had other things I wanted to do. I don't think that meant it would have been wrong for me to tell others about my personal experiences.

My wife has had ME for over 10 years, and her way of coping (and I have fully supported her in) has been "press on head down into the wind", without dwelling on things. I suspect that is a coping strategy many ME sufferers probably adopt. I have tended to do a quick google search every few months, the last one being latter end of August. Only then did I suddenly become enlightened regarding the wider picture.

Incidentally: Although we are often referred to as a small group of activists, I suspect there are far fewer people actively promoting the opposite view. IMHO by far the largest number of ME sufferers are not activists at all - their condition is far too overwhelming for them to be aware (let alone active advocates) one way or the other.

 

[Yogi]

I think you should look at this doc @Esther12


http://www.nets.nihr.ac.uk/__data/assets/pdf_file/0007/170962/PRO-14-192-109.pdf

10. DISSEMINATION & OUTPUTS The main outputs from the trial will be the findings on whether FITNET-NHS is effective and cost-effective, compared with Activity Management, for children with CFS/ME and for those children with additional co-morbid mood problems. Additional outputs will include: 1) Detailed knowledge of health care resource use for children with CFS/ME in primary and secondary care, before during and after access to specialist treatment. 2) Development of specialist internet-delivered CBT for a long term condition, with knowledge and expertise on delivering this intervention throughout the NHS. 3) Data on acceptability of remote access to specialist services using the Internet and telephone/videophone (e.g. Skype) for children with a long term condition. 4) A further the understanding of cognitive styles to explain why some adolescents with CFS/ME become depressed. These results will be important to researchers, clinicians (GPs and paediatricians), patients and the public. We will disseminate the findings to researchers by publishing results in open access high impact journals. We will ensure that the trial outcome is known to clinicians by presenting research findings at national and international conferences and meetings. We will cascade information through clinical and research networks including: the British Association for CFS/ME, the UK CFS/ME Research Collaborative (CMRC) and the NIHR National School of Primary Care Research (SPCR). We have a robust plan to raise awareness of CFS/ME and this trial in the first 18 months of this study. At the end of the trial, we will work to further disseminate the findings through blogs, emails, podcasts, Twitter etc. to clinicians and GPs. We will disseminate results to patients through the regional and national paediatric charity (Association of Young people with ME) and adult patient support groups that we work with as well as liaising with other charities to ensure dissemination throughout the UK. We will write “research in progress” articles for newsletters/websites, and speak at their meetings. We will communicate with the public by giving a public engagement lecture, an open academic lecture, press releasing every publication and giving interviews. We will disseminate results to politicians and policy makers using the All Party Parliamentary Group for CFS/ME and members of parliament who are part of the CMRC. We will inform NICE of the trial results so that results can be included in updated guidance.

 

[worldbackwards]

MEAction's press release which he has quoted only came out either yesterday or today.

The charities were really caught napping by this. I suspect there was secrecy around this for precisely this reason - no one to spoil the party.

 

[worldbackwards]

I think you should look at this doc @Esther12


http://www.nets.nihr.ac.uk/__data/assets/pdf_file/0007/170962/PRO-14-192-109.pdf

Good god. I hadn't fully digested the import of the timescale: 6 fucking years of FITNET.

FITNET will be coming out of our arses.

 

[Barry53]

We will write “research in progress” articles for newsletters/websites, and speak at their meetings. We will communicate with the public by giving a public engagement lecture, an open academic lecture, press releasing every publication and giving interviews. We will disseminate results to politicians and policy makers using the All Party Parliamentary Group for CFS/ME and members of parliament who are part of the CMRC. We will inform NICE of the trial results so that results can be included in updated guidance.

[My emphasis]

I strongly believe there is one crucial tenet that should be engraved into any protocol involving clinical trials or studies, especially ones having so much impact on the general public (indeed I think it should be law):

Any publishing/disseminating of study/trial results/claims, be they interim or final, absolutely must be accompanied by the anonymized raw data to back up those results. Results and underlying data should be treated as a matched set. No data = no publishing of results/claims.​

How could any good, high integrity researcher consider that wrong, especially when we have things in the above like "We will inform NICE of the trial results so that results can be included in updated guidance." You are playing with our lives people, so have the bottle to let your work be openly reviewed by your peers! If you are a good researcher, you have nothing to fear. And NICE guidelines should never be determined by any trial/study results/claims that have not been exposed to open peer review. What an incredibly parochial and antediluvian process the medical profession seems to be self absorbed with.

 

[Barry53]

Goog god. I hadn't fully digested the import of the timescale: 6 f**king years of FITNET.

FITNET will be coming out of our a*ses.

[My expletives attenuation]

And that is why any release/publication of results/claims/"influential opinions", just has to be accessible for open peer review. How many such interim results publications will there be along the way during this study, having enormous influence each time? Along with all the showbiz choreography that seems to accompanying them. I know Jan and others have been concerned about this aspect.

 

[Esther12]

I think you should look at this doc @Esther12


http://www.nets.nihr.ac.uk/__data/assets/pdf_file/0007/170962/PRO-14-192-109.pdf

I'm certainly not defending FITNET as a piece of work!

 

[Molly98]

I think you should look at this doc @Esther12


http://www.nets.nihr.ac.uk/__data/assets/pdf_file/0007/170962/PRO-14-192-109.pdf

This is really quite terrifying.
We as a community, along with charities who see this and share our concerns need to get an organised media and PR strategy together with urgency or things are going to get even worse for all of us.

 

[anniekim]

[My emphasis]

I strongly believe there is one crucial tenet that should be engraved into any protocol involving clinical trials or studies, especially ones having so much impact on the general public (indeed I think it should be law):

Any publishing/disseminating of study/trial results/claims, be they interim or final, absolutely must be accompanied by the anonymized raw data to back up those results. Results and underlying data should be treated as a matched set. No data = no publishing of results/claims.​

How could any good, high integrity researcher consider that wrong, especially when we have things in the above like "We will inform NICE of the trial results so that results can be included in updated guidance." You are playing with our lives people, so have the bottle to let your work be openly reviewed by your peers! If you are a good researcher, you have nothing to fear. And NICE guidelines should never be determined by any trial/study results/claims that have not been exposed to open peer review. What an incredibly parochial and antediluvian process the medical profession seems to be self absorbed with.

You are right, but all I keep thinking with FitNet even with accessible raw data, it's a stitch up when the criteria for this study only requires 3 months fatigue. Many of these children will not even have M.E.