Michael Sharpe skewered by @JohntheJack on Twitter

I agree that there is blurring of lines when it comes to quality of research vs corruption.

However If we are to win in terms of communication and winning popular opinion we need to be more focussed. The debates are complex. That is why depending upon audience we need to break it down to simple messages that can be rammed home at very opportunity. Having endless twitter debates and picking off individuals one by one has its place, granted but these little wins won’t change the tide on their own.

A large part of why these so called policies win ais that they tap into established prejudices (bed blockers, lazy people sponging off the state, hypochondriacs wasting NHS time etc etc).

We need to focus on ME as a real disease and campaign for biological markers and research equality. We also need to learn from the AIDS campaigns where they broke down stereotypes and made it clear it wasn’t just drug users and homosexuals that were at risk. Even ‘normal’ people could get it.

We need to pick the battles and bed in for a long battle of words.

I’m not particularly picking on your comments @Robert 1973 im sorry if you felt that way, it’s just something I’ve been picking up from debates over the last couple of years. We are easily side tracked ..the whole name debate is just a good example of how if we are unfocused, our opponents in this debate can quite easily send us off down a blind alley. So regrettably some of the harder to win battles will have to be shelved. That is not being naive it’s being practical and focusing on your objectives.

My objectives whenever I talk to anyone about my illness is to avoid the name debate (I call it a mitochondrial disease...nobody cares enough to contradict). I also avoid the scandal of psychiatric hijacking (sounds too paranoid/ conspiracy theorist when explained quickly) and just focus on the real issues of living with this illness/condition and the fact that there is no cure and it could happen to anyone.

I think when things are complicated people turn off ...just look at the `brexit bus’ comparison ...simple numbers and messages that appealed directly to what people cared about won the day...even if in this instance they weren’t particularly truthful

https://www.google.co.uk/search?q=v...AUIESgB&biw=1366&bih=922#imgrc=CioV5XsAA4JmTM:

https://www.google.co.uk/search?q=v...AUIESgB&biw=1366&bih=922#imgrc=PNW3yyayj7gjFM:
 
arewenearlythereyet said:
I agree that there is blurring of lines when it comes to quality of research vs corruption.

However If we are to win in terms of communication and winning popular opinion we need to be more focussed. The debates are complex. That is why depending upon audience we need to break it down to simple messages that can be rammed home at very opportunity. Having endless twitter debates and picking off individuals one by one has its place, granted but these little wins won’t change the tide on their own.

A large part of why these so called policies win ais that they tap into established prejudices (bed blockers, lazy people sponging off the state, hypochondriacs wasting NHS time etc etc).

We need to focus on ME as a real disease and campaign for biological markers and research equality. We also need to learn from the AIDS campaigns where they broke down stereotypes and made it clear it wasn’t just drug users and homosexuals that were at risk. Even ‘normal’ people could get it.

We need to pick the battles and bed in for a long battle of words.

I’m not particularly picking on your comments @Robert 1973 im sorry if you felt that way, it’s just something I’ve been picking up from debates over the last couple of years. We are easily side tracked ..the whole name debate is just a good example of how if we are unfocused, our opponents in this debate can quite easily send us off down a blind alley. So regrettably some of the harder to win battles will have to be shelved. That is not being naive it’s being practical and focusing on your objectives.

My objectives whenever I talk to anyone about my illness is to avoid the name debate (I call it a mitochondrial disease...nobody cares enough to contradict). I also avoid the scandal of psychiatric hijacking (sounds too paranoid/ conspiracy theorist when explained quickly) and just focus on the real issues of living with this illness/condition and the fact that there is no cure and it could happen to anyone.

I think when things are complicated people turn off ...just look at the `brexit bus’ comparison ...simple numbers and messages that appealed directly to what people cared about won the day...even if in this instance they weren’t particularly truthful

https://www.google.co.uk/search?q=v...AUIESgB&biw=1366&bih=922#imgrc=CioV5XsAA4JmTM:

https://www.google.co.uk/search?q=v...AUIESgB&biw=1366&bih=922#imgrc=PNW3yyayj7gjFM:
Click to expand...

I agree completely. All that matters to me is finding out what causes this disease and then developing a treatment.
 
arewenearlythereyet said:
I agree that there is blurring of lines when it comes to quality of research vs corruption.

However If we are to win in terms of communication and winning popular opinion we need to be more focussed. The debates are complex. That is why depending upon audience we need to break it down to simple messages that can be rammed home at very opportunity. Having endless twitter debates and picking off individuals one by one has its place, granted but these little wins won’t change the tide on their own.

A large part of why these so called policies win ais that they tap into established prejudices (bed blockers, lazy people sponging off the state, hypochondriacs wasting NHS time etc etc).

We need to focus on ME as a real disease and campaign for biological markers and research equality. We also need to learn from the AIDS campaigns where they broke down stereotypes and made it clear it wasn’t just drug users and homosexuals that were at risk. Even ‘normal’ people could get it.

We need to pick the battles and bed in for a long battle of words.

I’m not particularly picking on your comments @Robert 1973 im sorry if you felt that way, it’s just something I’ve been picking up from debates over the last couple of years. We are easily side tracked ..the whole name debate is just a good example of how if we are unfocused, our opponents in this debate can quite easily send us off down a blind alley. So regrettably some of the harder to win battles will have to be shelved. That is not being naive it’s being practical and focusing on your objectives.

My objectives whenever I talk to anyone about my illness is to avoid the name debate (I call it a mitochondrial disease...nobody cares enough to contradict). I also avoid the scandal of psychiatric hijacking (sounds too paranoid/ conspiracy theorist when explained quickly) and just focus on the real issues of living with this illness/condition and the fact that there is no cure and it could happen to anyone.

I think when things are complicated people turn off ...just look at the `brexit bus’ comparison ...simple numbers and messages that appealed directly to what people cared about won the day...even if in this instance they weren’t particularly truthful

https://www.google.co.uk/search?q=v...AUIESgB&biw=1366&bih=922#imgrc=CioV5XsAA4JmTM:

https://www.google.co.uk/search?q=v...AUIESgB&biw=1366&bih=922#imgrc=PNW3yyayj7gjFM:
Click to expand...


I think you’re right. I know I’ll probably get heat for this but I find the obsession with picking apart a trial that happened 7 years ago as a poor advocacy tool to onlookers. All of that is important but what matters is where we are now - treatment is inadequate, patients are not being listened to, and research is not being done.
 
The PACE trial must be contested or it will continue to be used to inform NICE recommendations. Thus it is important that it becomes recognised as unreliable evidence.

Edit to reword a bit
 
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Keela Too said:
The PACE trial must be contested or it will continue to be used to inform NICE recommendations. Thus it is important that it becomes recognised as unreliable evidence.

Edit to reword a bit
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I wasn't disputing that. I was just saying that I don't think it works particularly well as an advocacy tool for those outside our little bubble.
 
It is interesting, yet onlookers may think we have treatments, they’ll have heard all the media hype on exercise and have absorbed it as common sense. So in my view it’s still important to spell out the problems. Agree there are other things we can talk about to further our cause, but I still think picking apart bad research is vital - even when explaining our situation to those who know little.
 
TiredSam said:
So after banning himself from twitter for a week MS can't resist having a little peek on Sunday afternoon. Continues to struggle with the English language, as "stastician" isn't a word. Something must have annoyed him.
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Stastician - the numerical study of things that do not move? E.g. Michael Sharpe's brain showed no signs of working. This was recorded by a Stastician observing his tweets.
 
On advocacy there are three goals I like to think about most. The first is how to accelerate research. We need to increase the rate of good research, not just any research. The second is to apply the brakes to bad research. Its being used to treat patients, and advise government and insurance companies. The third is to support patients. In this complex mess there are lots of people in need. I think these goals are all important.

I also suspect a tendency to focus on our major issue is a function of ME. We do not multitask well, we tend to work in whatever area we know most about, and care most about. Over time advocates can broaden their scope, but to start with we do much better taking a narrow focus. That is the ME brain at work ... its not like our cognition typically has the full range of most healthy people. A corollary of this is that we tend not to see the big picture, but most healthy people struggle with the big picture anyway. However a community easily makes up for that, with many divergent considerations coming into discussion.
 
Wow, Michael Sharpe has blocked me but is still tweeting at me. I haven't blocked him because I don't want to bother--he's free to see my tweets and I'll probably tweet my response anyway. I thought he had learned his lesson about tweeting. Poor guy. The intervention has failed.
 
dave30th said:
Wow, Michael Sharpe has blocked me but is still tweeting at me. I haven't blocked him because I don't want to bother--he's free to see my tweets and I'll probably tweet my response anyway. I thought he had learned his lesson about tweeting. Poor guy. The intervention has failed.
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Sounds very Sharpe. Posing questions to people after having made it impossible for them to reply.
 
Dr Carrot said:
I think you’re right. I know I’ll probably get heat for this but I find the obsession with picking apart a trial that happened 7 years ago as a poor advocacy tool to onlookers. All of that is important but what matters is where we are now - treatment is inadequate, patients are not being listened to, and research is not being done.
Click to expand...
Well I've done more than my fair share of that, but I do agree with you. Can I offer a perspective?

We need the public on our side, and banging on about the PACE trial isn't going to do that at all. In that sense I totally agree with you. Most of the MPs fall into that camp as well. They need to recognize how bad the situation is for people with ME, and how little research has been carried out. This is an area that we haven't done well at: probably "Unrest" is the first major step forward, despite all the tragedies.

But we are also treated according to NICE guidelines, public money into research is funded through the MRC and NIHR, employment benefits are difficult to get, and insurance companies try hard not to pay out. All of those either are affected by the PACE trial (and similar ones), or use the PACE trial authors as "experts". So we do need to hammer home the truth on that to those institutions, and to do so publicly.

One of the problems we have with ME still is similar to that of HIV/AIDS in the early days: those in positions of influence or power, and those in the medical or research world, are reluctant to admit when they have been hit by it. PACE and its supporters made that so, and we have not really done much to change that. I think with HIV, getting celebrities on side, and getting big "Hollywood" films portraying it sympathetically, helped a lot with that. Megan Markle to become president of the ME 25% group????
 
Graham said:
Well I've done more than my fair share of that, but I do agree with you. Can I offer a perspective?

We need the public on our side, and banging on about the PACE trial isn't going to do that at all. In that sense I totally agree with you. Most of the MPs fall into that camp as well. They need to recognize how bad the situation is for people with ME, and how little research has been carried out. This is an area that we haven't done well at: probably "Unrest" is the first major step forward, despite all the tragedies.

But we are also treated according to NICE guidelines, public money into research is funded through the MRC and NIHR, employment benefits are difficult to get, and insurance companies try hard not to pay out. All of those either are affected by the PACE trial (and similar ones), or use the PACE trial authors as "experts". So we do need to hammer home the truth on that to those institutions, and to do so publicly.

One of the problems we have with ME still is similar to that of HIV/AIDS in the early days: those in positions of influence or power, and those in the medical or research world, are reluctant to admit when they have been hit by it. PACE and its supporters made that so, and we have not really done much to change that. I think with HIV, getting celebrities on side, and getting big "Hollywood" films portraying it sympathetically, helped a lot with that. Megan Markle to become president of the ME 25% group????
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Great perspective, thanks for articulating that Graham! Yes I would agree with that.
 
Just a thought, but a basic list of so called RCT's (Randomised Controlled Trial) done on ME/CFS in the last x number of years by the PACE trial authors (and other major supporters) that are based on the same 'deconditioning hypothesis' showing simply
1) No Control Group
2) No blinding
3) No objective primary outcome measures
4) Percentage of participants classed as 'recovered'.

[Maybe a simple sentence to start to say 'there have been approximately x number of RCTs done on ME/CFS in the last x number of years' x percent on GET/CBT and only x percent on ...... (have there been any trials on anything else?)]

might give a better idea to those who think it's only one trial (PACE) that is considered a problem.
 
Lucibee said:
This tweet adds a bit more to the use of CFS/ME terminology:



I've quoted the relevant bit of the document here:

"Again on Saturday 12th January, Stephen Holgate sent another email: ”To all: One point that I would like a view on is the terminology: CFS/ME or ME/CFS, NHS, NICE and MRC use CFS/ME. I wish to be consistent so can I have a view from all please. I will then make any changes (including the name of the collaborative!)" (quote 6)

Simon Wessely was on the list of recipients. He replied: “Thanks for asking. I think we should stick with CFS/ME frankly. Keeps it in line with MRC and NICE. Journals certainly only use CFS. USA doesn’t use ME at all. CFS/ME seems to be the best compromise. Nervous that ME/CFS would alienate one or two researchers not actively involved in area but who you would like to see involved.” (quote 7)

This view was endorsed by Peter White “...... I agree with Simon that CFS has to lead. The hybrid CFS/ME allows the broad church that encourages generalizable research, while allowing stratification where necessary.” (quote 8)

Sonya Chowdhury, CEO of Action for ME (AfME) replied “ ... my preference is that we use ME/CFS and I suspect if we were to ask members, there would be a preference for this form from them too. However, I am prepared to work with either as the importance here is consistency and collaboration and if the general view differs, I will go with the majority.” (quote 9)

The MEA stated a preference for ME/CFS but that they also were “happy to accept the majority view on this”. (quote 10)

MERUK’s preference was also for ME/CFS, they added “we use ME/CFS as do the patient-based campaigning charities.” (quote 11)

On 21st January Stephen Holgate emailed the group, “After undertaking a poll for preferences of a title, the CFS/ME terminology seems to be the option most wish to go for. It seems that the NHS, Research Councils and NICE use this terminology as do the majority on Pubmed. I hope we can now accept this.” (quote 1)

The Collaborative thus became the UK CFS/ME Research Collaborative (UK CMRC)."

SW says "Journals certainly only use CFS" - pretty sure that's because he told them to!
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(bolding mine)

Hm..

Let's see.

When searching for "ME/CFS" on Pubmed I get 7874 hits
Only 231 hits for "CFS/ME".
7967 for "myalgic encephalomyelitis"
7868 for "chronic fatigue syndrome"
5615 for "CFS"

And as far as my personal experience goes, I have seen WAY more articles using ME/CFS, than I have CFS/ME. But that may be because unlike Wessely, I don't read psychosomatic nonsense.
 
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dave30th said:
Wow, Michael Sharpe has blocked me but is still tweeting at me. I haven't blocked him because I don't want to bother--he's free to see my tweets and I'll probably tweet my response anyway. I thought he had learned his lesson about tweeting. Poor guy. The intervention has failed.
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I don't think you can see the Tweets of someone you've blocked. This suggests that MS is periodically unblocking people to read and reply to their Tweets and then blocking them again so that they can't read what he's written or reply. I'm starting to wonder if it may be a parody account.
 
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