ME charities' response to the Reuters article

[andypants]

I’d have expected some presence & support from our charities. I’ve been really affected by this weeks attacks in the media. I feel that patients have been abandoned and left to defend themselves with what little strength they have.

I don’t want my friends, family, GP or whoever reading and maybe believing these hurtful narratives.

I’m extremely disappointed. I’ve been very hurt by all of this.

Agreed. It feels like it's been very much up to individual patients to take up the fight, and while many have done this extremely well I think we're all exhausted and deeply affected by the intense activity level and negative focus this week.

I see so many pwME coming together to do their little bit by liking and retweeting when they can't manage to formulate polite and factual answers. We already feel abandoned by the health and social services, the general public, and the media, and now not even the charities came out in our defense. I realise it was a planned choice, but it wasn't the right one in my opinion, at least not when it became so much more than that first article.

 

[Adam pwme]

@EspeMor

A few suggestions, sorry they may involve considerable effort/cost which I know is in short supply. Just thinking out loud.

Some short explainer videos 5 minutes max would really help get the message out. The topic is complicated and difficult to explain especially when people can't be bothered to read long articles. Maybe split them into key topics, like harm, the pace trial, the history, what is me, harrasment, etc. These don't have to be big budget, but with a human face, endorsed by a charity gives it more weight.Can any of the science sections of unrest be reused? Or other me action videos? Whiteboard video Software for non technical people like videoscribe may be helpful.



Does ME action have a camera? It would be good to interview researchers at conferences and ask for a one line opinion on pace if they are prepared to speak publicly. A compilation video would show its not just a small group of militant patients.

It would also be good to debunk Sharpes BBC interview in a video too, line by line pointing out the problems. Sharpe gets away with smearing journals charities he needs to be called out.

These types of videos will hopefully be shared to help people get their friends on board. My friends aren't interested in watching films or reading long articles. Too long didn't read is far too common. A pots explainer on YouTube has 120000 views on YouTube so could be good for publicity too.

Maybe the charities could work together, or allocate some money for a shared campaign. Or set up a separate crowd fund.

Its also worth considering other ways to get the message out. Contacting science you tubers, podcasters, alternative media etc.

An ME action pr/creative Facebook group, would be good to get graphic designers, video editors, etc involved in projects.

A website dedicated to debunking PACE would be good too.

I'd help if I could. Just too sick.

 

[dangermouse]

and now not even the charities came out in our defense. I realise it was a planned choice, but it wasn't the right one in my opinion,

Agreed. It has been emotionally draining, upsetting and hurtful. Some excellent responses from patients but complete silence from charities, except a little piece from Action for ME.

Unbelievable. Absolutely unbelievable.

 

[Cinders66]

Dr Charles Shepherd posted in Facebook when someone mentioned raising it with NICE
“The next meeting of the NICE guideline development committee is on March 29th. We already have a very full agenda and my personal view is that there are going to be far more important AOB things to raise than the Reuters report. CS”

I think that might be why not getting into a public battle with the other side was decided. I do think that, as with membership of CMRC, the seat on NICE might mute certain activities and support of activism.

 

[JemPD]

Paraphrasing. "hey guys, we know you've had a shit week, what with all the media and stuff, but here's how to order t-shirts from us - as they say, 'every Liddle helps' "

Well i personally wish those 'it's real, it's physical, it's ME' shirts would disappear, rather than sell more!

It would be good to interview researchers at conferences and ask for a one line opinion on pace if they are prepared to speak publicly. A compilation video would show its not just a small group of militant patients.

That would be good.... very good... but it'd have to be careful not to include anything factually incorrect.
And given the meme we are fighting, also avoid insulting language. It's all very well for Tuller to call it garbage - he's right - but I don't think it would help our cause if lots of others do that or similar no matter how accurate that might be - it would only be a gift of ammunition. (I'm not saying they would necessarily say anything non factual or insulting, only that it would need to be avoided.)

 

[JaimeS]

is @EspeMor on her own as #MEAction UK rep? or is there a team?

I swore I wouldn't jump in but I've got to on a thread like this.

Espe has a team of UK volunteers, and I support Espe.

I'll also mea culpa: I was producing an article in preparation for this, but received a bevy of conflicting advice re: wait until the article came out before doing more than some basic outlining and resource-gathering and in the end I agreed. Now just keeping up with responses and putting out specific fires has knocked me out of the running for awhile, that being the nature of the beast.

So #MEAction knew this was coming (hence why we sent out the letter about responding beforehand, to which our cadre of UK volunteers agreed). The strategy has to shift because it is more of a last-ditch blitz than any of us pictured. I do think it shows their desperation. But it's an effective last stand, and we need to come together to counter it.

As I said on Twitter if you follow me: there are a lot of good things coming down the pike, and they are continuing to chug forward inexorably despite this current awfulness. They will work on their own as counters to GET/CBT credibility. However, we've got to counter this salvo.

Will continue to read this thread with interest.

 

[andypants]

Your article was a VERY welcome addition, @JaimeS

I think from the UK charities perspective, what was needed was not necessarily for them to respond with more media coverage or articles (as we know those are not always helpful), but they could have done a lot to let patients know that they had our backs and help keep spirits up.

 

[JaimeS]

Some excellent responses from patients but complete silence from charities, except a little piece from Action for ME.

Agreed. It feels like it's been very much up to individual patients to take up the fight

there should have been at least a message put out saying these media articles are wrong, all you pwME aren't in the wrong, we are working to fund research, to bring new researchers into the field and that hating on seriously ill people is not acceptable.

1) From #MEAction:
https://www.meaction.net/2019/03/14/fighting-for-rigorous-science-and-accurate-reporting/

2) Adriane has been re-working the letter here and sending it to every news outlet who have reported on this.

3) I have been on social media supporting people personally, and so have other #MEAction staff like Holly and Espe.

The thing is, nothing we say can undo what's been done, and everyone has been hurt by this, which makes it feel like we can never have done enough.

We can only keep fighting, and decide what to do next.

And no matter how much we post what we're doing on social media, many people won't see it. I know I've posted our link here on S4ME and so has @EspeMor -- but that doesn't mean everyone here on S4ME knows what we've done and what we're continuing to do.

@EspeMor I think we need to produce a letter going out to #MEAction members so that what's going on and what we're doing about it is more widespread news.

 

[JaimeS]

Your article was a VERY welcome addition, @JaimeS

I think from the UK charities perspective, what was needed was not necessarily for them to respond with more media coverage or articles (as we know those are not always helpful), but they could have done a lot to let patients know that they had our backs and help keep spirits up.

Thanks @andypants I really appeciate that. I know I mentioned elsewhere that it broke my heart to write it.

Note the last line in my post above:

I think we need to produce a letter going out to #MEAction members so that what's going on and what we're doing about it is more widespread news.

People need action right now, but you're right. We also need to come together.

 

[andypants]

And no matter how much we post what we're doing on social media, many people won't see it. I know I've posted our link here on S4ME and so has @EspeMor -- but that doesn't mean everyone here on S4ME knows what we've done and what we're continuing to do.

To be clear ME Action did everything right in my opinion, and I know you and several others worked themselves to the bone to help out. That felt like real support! And that again broke MY heart, because after all most of you are patients too and I was seriously worried for your health this week.

 

[Jonathan Edwards]

I know it has been a disturbing week but my gut feeling is that it will all be seen as fluff in the fullness of time. What will matter is the appearance of the Wilshire/Kindlon second reply. That will set the literature straight. And the real events playing out in the Cochrane/NICE arena are not going to be driven off course by the Reuter's piece or any fallout. There needs to be much wider involvement of medical academia in the debate. Maybe I should have pushed for that before but I think there were good reasons not to dive in too soon. The issues are now fully covered in the peer reviewed journals.

Michael Sharpe has said some things on Radio 4 that he will regret. You cannot claim that disinterested scientific critique from senior academics is motivated by hate, when it isn't.

 

[dangermouse]

Your article was a VERY welcome addition, @JaimeS

Agreed. Thank you @JaimeS

 

[Andy]

Jaime, certainly your, and others, personal efforts to support the community on social media was seen and very much appreciated. And I am not suggesting that the charities should have had the people who work/volunteer for them on social media hunting down every misrepresentative post and countering it. It's the charities larger, singular actions that were needed and that were very obviously missing.

While I do agree with what Jo says that, in time, this will be seen as a blip in our progress, for pwME, especially those who don't have a greater awareness of what might be going on behind the scenes, this will have been a horrible time to try to get through. I know I've found it tough, I just hope that this wasn't a final straw for any desperate people out there.

 

[EspeMor]

@EspeMor

A few suggestions, sorry they may involve considerable effort/cost which I know is in short supply. Just thinking out loud.

Some short explainer videos 5 minutes max would really help get the message out. The topic is complicated and difficult to explain especially when people can't be bothered to read long articles. Maybe split them into key topics, like harm, the pace trial, the history, what is me, harrasment, etc. These don't have to be big budget, but with a human face, endorsed by a charity gives it more weight.Can any of the science sections of unrest be reused? Or other me action videos? Whiteboard video Software for non technical people like videoscribe may be helpful.



Does ME action have a camera? It would be good to interview researchers at conferences and ask for a one line opinion on pace if they are prepared to speak publicly. A compilation video would show its not just a small group of militant patients.

It would also be good to debunk Sharpes BBC interview in a video too, line by line pointing out the problems. Sharpe gets away with smearing journals charities he needs to be called out.

These types of videos will hopefully be shared to help people get their friends on board. My friends aren't interested in watching films or reading long articles. Too long didn't read is far too common. A pots explainer on YouTube has 120000 views on YouTube so could be good for publicity too.

Maybe the charities could work together, or allocate some money for a shared campaign. Or set up a separate crowd fund.

Its also worth considering other ways to get the message out. Contacting science you tubers, podcasters, alternative media etc.

An ME action pr/creative Facebook group, would be good to get graphic designers, video editors, etc involved in projects.

A website dedicated to debunking PACE would be good too.

I'd help if I could. Just too sick.

OH I wish Adam but we don't simply have the capacity. We look like we have 20 people on staff but it's not like that :S But thanks for the input, it's really valuable!!

 

[wigglethemouse]

I swore I wouldn't jump in but I've got to on a thread like this.

I promised myself I wouldn't enter BPS threads. Just a quickie here (makes me so mad)

The UK has some fantastic biological research work going on with new researchers joining the fold. A good way to counter Sharpe is getting a story out about this.

Here are five topics of the top of my head

* young Cara Tomas from Newcastle University travels around the world presenting her groundbreaking research on cellular energy disruption at Conferences in the UK, Canada, and Australia in the last year

* Experienced Mitochondrial expert Karl Morten from Oxford has joined the hunt for a biomarker and has found Raman Spectroscopy identifies a unique signature - funding to extend this work is currently with the MRC for approval

* A new center for ME/CFS research has very recently been established at Harvard University in the US and consists of a UK based team of XX experts to ........

* The Quadram Institute ME/CFS research center is getting up and running and is participating in joint studies with researchers across Europe

* The ME/CFS Biobank in London has recently renewed it's long term funding with the US NIH and has received over $4MM in funding since 2013. It is considered the world leader in biobanking for this disease and is enabling researchers around the world to accelerate the pace of their studies...........

 

[Binkie4]

Thanks @Andy for continuing to plug on MEA’s fb page with so little response.

There are very reasoned comments there including from Merryn Crofts’s mother who has been so supportive to pwme via the MEA. What it must cost her after her daughter’s death from ME... ....is difficult to imagine but it does not seem to penetrate to MEA.

There is something very wrong there. I have added a comment but maybe we’re talking to a closed door.

eTA: to MEA added- end of second para

 

[Londinium]

I know it has been a disturbing week but my gut feeling is that it will all be seen as fluff in the fullness of time. What will matter is the appearance of the Wilshire/Kindlon second reply. That will set the literature straight. And the real events playing out in the Cochrane/NICE arena are not going to be driven off course by the Reuter's piece or any fallout. There needs to be much wider involvement of medical academia in the debate. Maybe I should have pushed for that before but I think there were good reasons not to dive in too soon. The issues are now fully covered in the peer reviewed journals.

Michael Sharpe has said some things on Radio 4 that he will regret. You cannot claim that disinterested scientific critique from senior academics is motivated by hate, when it isn't.

I may be being naively optimistic but I saw this week as a final mic drop by PACE defenders. Picking up their ball and running home because they're 2-1 down. The strategies of accusing critics of being militants might work when it's patients but if you have to accuse a scientific journal as being in on the conspiracy you're the one who sounds unhinged.

This was the dying cry of 'wah it's unfair, not playing any more' as PACE has been criticised in peer-reviewed journals, had bad headlines in mainstream press, seen the NIH pivot away from BPS-based research for ME/CFS and seen medical agencies in many countries start to shy away from GET. There was mention of the JHP critique on the Today Programme (which previously has been so unbalanced as to have to be forced to give the MEA right of reply) and the Guardian even allowed a piece sympathetic to ME/CFS patients. The only person they could rustle up was Rod Liddle, who I imagine is as about as welcome on your side as a persuasive advocate as Piers Morgan given how many people dismiss his ramblings out of hand just given the source.

Yes, it got some airplay but nowhere near the blanket uncritical coverage as in the past. Bit of a damp squib, and in many respects the decision of certain ME charities to just ignore it is somewhat understandable.

</naive optimism>

 

[Snowdrop]

C Sheppard said:

"But my view remains that personal contact with those involved, including an offer to meet and discuss and explain the controversies surounding PACE, CBT and GET, is going to be far more productive than making public statements which are only going to be read by people with ME/CFS"

Briefly. Well that would be fine by me but I really don't see any proof of that being the case. The backroom have a word thing has been the MO for decades and here we are. Yelling loud and big in public seems to have changed the landscape more recently.

 

[Trish]

I have no problem with Charles Shepherd making a personal decision how he uses his limited energy for ME advocacy. He does a huge amount of very valuable work and is not a salaried employee of the MEA.

However CS is not the whole MEA. It would be possible for the MEA to produce a statement to put on their website responding to the media blitz in away that both provides useful information with links for anyone, journalists, doctors pwme etc who may read an article and look to the MEA to find out more, and an expression of solidarity and support for distressed pwME.

 

[Snowdrop]

I have no problem with Charles Shepherd making a personal decision how he uses his limited energy for ME advocacy. He does a huge amount of very valuable work and is not a salaried employee of the MEA.

You're certainly right that CS can choose to advocate however he feels best. Perhaps there should be someone else at MEA who can function in a different capacity for the benefit of MEA's members as they raise issues like the one's here.

I should stop though since I have no direct skin in the game.