The i newspaper: CFS how online abuse is halting research

[rvallee]

Haha! Wonko, no!...

I don’t think that’s quite true. They’re not sadists trying to inflict pain on vulnerable individuals.

The problem is they don’t think about anyone other than themselves. It’s all a bit me, me, me and not enough M.E.

The charges are that they’re egotistical, narcissistic and lacking empathy or insight into the effect of their actions on others. They’re not intentionally setting out to hurt people, they just don’t particularly care.

You are both correct. In medicine, the consequences of ideological self-promotion at the expense of patients is death and suffering. This is the deal. Everyone who works in medicine understands this is the deal, that lives will be wrecked or saved based on how they approach their work, especially with how they deal with failure and mistakes.

Sharpe, Wessely and the rest know they are hurting us. They choose to perpetuate this because their careers will be destroyed once their fiction unravels. They know the consequences. They choose this, could stop it any day. Instead they continue vilifying the witnesses of their crime so that our testimony will continue to be worthless.

 

[fivetowns]

There's a lot of nothing in that article. Impossible to remember it all!

There was discussion of the paper cited here: https://forums.phoenixrising.me/thr...-adult-patients-in-england.52845/#post-875674

Thanks @Esther12 ! Look's like the good folks at PR have already critiqued the crap out of the paper! Initially I was interested in finding the paper to double check that Kelland (having already used a single clinical trial registry to imply the number of ME/CFS trials is declining) had not been 'creative' in her representation of the papers conclusions. As the paper's conclusion itself states "one third of patients reported substantial overall improvement in their health" I can't fault her reporting of the research. The paper itself was terrible; only 46% of the patients they had baseline data for completed the follow-up questionnaires so its hard to see how they can justify any conclusion made on such incomplete data. I know this isn't the right thread for this but I wonder if its still worth discussing somewhere else on S4ME. It might be useful re: NICE guidelines as I imagine it might come up in the evidence for CBT/ME.

 

[Esther12]

As the paper's conclusion itself states "one third of patients reported substantial overall improvement in their health" I can't fault her reporting of the research.

I think her reporting can be criticised when she says "around a third of adults affected by the illness who attended these specialist clinics reported substantial improvement". She didn't say "around a third of those adults who attended these clinics and then went on to complete follow-up questionnaires reported substantial improvement". That the previous sentence says services "treat around 8,000 adults each year" emphasises that her "around a third" applies to all those who attended these services imo.

"In Britain there are at least 50 specialist chronic fatigue syndrome services that treat around 8,000 adults each year under government guidelines, offering behavioral and psychological therapies. Research published in July 2017 showed around a third of adults affected by the illness who attended these specialist clinics reported substantial improvement in their health."

It probably would be valuable to have something summarising the problems with this paper.

 

[Wonko]

So that's 3 unique people a week each center treats? (8000/52/50).

Granted some people may return, possibly pushing that up to 36 visits a week per center. I have no idea how long a visit is but hardly busy.

How many staff does these centers employ, at what cost, divided by the contact hours.

How much per hour does it cost to harm a patient?

Is this a cheaper or more efficient way of harming people than other methods?

Maybe the words got out?

 

[dave30th]

I think her reporting can be criticised when she says "around a third of adults affected by the illness who attended these specialist clinics reported substantial improvement". She didn't say "around a third of those adults who attended these clinics and then went on to complete follow-up questionnaires reported substantial improvement". That the previous sentence says services "treat around 8,000 adults each year" emphasises that her "around a third" applies to all those who attended these services imo.

that's a good catch.

 

[It's M.E. Linda]

Granted some people may return, possibly pushing that up to 36 visits a week per center. I have no idea how long a visit is but hardly busy.

How many staff does these centers employ, at what cost, divided by the contact hours.

I only have experience of one “clinic” in my area.

Our County has a clinic, which is open only on a Tuesday, and is a satellite to the full time clinic in one of the big cities in SW England.

I believe that there are two Clinicians (no doctors) who

• run group ‘foundation’ courses (two weekly, last 2 hours (with break and meditation in the middle), for 5 sessions. One folllow up session 3-4 months later)
• have 1:1 meetings (allow one hour total per patient - read notes, hold new appt and write up today’s notes) and also
• do some 1:1 telephone consultations (for PwME unable to even travel to clinic in County).

This “one day a week for a whole county” clinic would be counted in the total number of 50 clinics.

Please don’t get me wrong, the staff at the local clinic have a lot of common sense and are providing some helpful support to PwME

I had 10 x 1:1 sessions (should have been 8 but was in the middle of being dismissed from work, so Clinician was assisting with Occupational Health reviews/Managers for me).

Then discharged January 2015 to GP care.

 

[dave30th]

What is the i newspaper anyway?

 

[Esther12]

that's a good catch.

All credit to @fivetowns for looking back at the paper. It's only a little thing compared to all the other problems with the article... but it is a bit annoying that the only figures from a research paper presented are written up in a slip-shod manner.

What is the i newspaper anyway?

https://en.wikipedia.org/wiki/I_(newspaper)

 

[chrisb]

Jeremy Laurance, Health Editor, The Independent, said: “It is not your contacts that impress - or not only - but your ability to get responses out of them in short order. Brilliant."
acmedsci.ac.uk/file-download/37090-551d028c91645.pdf

This was a May 2013 publicity puff for the SMC. Not sure what Laurance does now or who the health editor of the I is.

 

[fivetowns]

I think her reporting can be criticised when she says "around a third of adults affected by the illness who attended these specialist clinics reported substantial improvement". She didn't say "around a third of those adults who attended these clinics and then went on to complete follow-up questionnaires reported substantial improvement". That the previous sentence says services "treat around 8,000 adults each year" emphasises that her "around a third" applies to all those who attended these services imo.

Excellent point, I wish I'd picked up on it!

It probably would be valuable to have something summarising the problems with this paper.

I'm working on a S4ME thread outlining the problems that PR found with the paper. It's taking a while to do though as they made a lot of valid criticisms of the research.

 

[Sly Saint]

the problems that PR found with the paper

you do realise that a lot of 'them' are members here(?)

 

[JaimeS]

@EspeMor @JaimeS can we assume that the i will be in receipt of a copy of the ME Action letter?!

Siiiiiigh yes.

 

[JaimeS]

Disgraceful this concerted campaign of abuse of pwme continues.

Just had a heartbreaking email from a severely affected pwme, ill since teens in early 80s, isolated with no friends, living alone on benefits after parents died, disbelieving family and neighbours, unhelpful struggling care company.
She is in despair after seeing this, having tried GET and CBT years ago but they all blame her for not recovering, and she has to face alone family, neighbours and carers with their views further hardened by this campaign.
And this is just one pwme among so many.

I do wonder if the perpetrators of this media campaign ever give a thought to the untold suffering they cause.

I can't think it matters to them. They have painted themselves in victimhood and must generally believe it to do what they do.

They must also valorize themselves in order to make this sort of behavior acceptable, even within their own minds: proud warriors for science, standing against the ravening hordes of science deniers!

 

[Esther12]

you do realise that a lot of 'them' are members here(?)

Particularly the ones who find problems with papers!

 

[fivetowns]

you do realise that a lot of 'them' are members here(?)

Particularly the ones who find problems with papers!

Yes I was aware that most of the commenters on PR but it's not been discussed on here and when @Esther12 said

It probably would be valuable to have something summarising the problems with this paper.

I thought she meant it would be good to summarise the paper here on S4me. I take it I got the wrong end of the stick?

 

[Wonko]

There's a stick? Again?

 

[Esther12]

I take it I got the wrong end of the stick?

No, you didn't at all. I think @Sly Saint was being a bit jokey. There is some irritation around about some of the history there, and people being cut off from their past work. We try not to discuss that here out of fear of snark taking over the forum, and that might lead to some confusing comments every now and again.

 

[JaimeS]

There's a stick? Again?

Also a carrot.

 

[fivetowns]

No, you didn't at all. I think @Sly Saint was being a bit jokey. There is some irritation around about some of the history there, and people being cut off from their past work. We try not to discuss that here out of fear of snark taking over the forum, and that might lead to some confusing comments every now and again.

Thanks for letting me know. As I am new(ish) here I wasn't aware of the history between the two forums so sorry if all the talk of PR opened up some old wounds. If it helps I was planning on crediting members of this forum for any points made on PR used in the summary anyway (I didn't want anyone to mistakenly think the work was all my own).

 

[JellyBabyKid]

Siiiiiigh yes.

Thank you