The Times - Call for review of ‘flawed’ ME research in Lancet letter

Perhaps. But a lot of US clinicians offer experimental treatments. There’s not much evidence for most things in this field.

 

True. It was just a suggestion.

Felt like it would be wrong for me (as a Belgian) not to mention it.

 

What about Carmen Scheibenbogen ?
maybe something our German Group could look into?

@TiredSam @Joh @Inara

 

https://www.meassociation.org.uk/20...-me-research-in-lancet-letter-21-august-2018/

I have written a note of thanks to Nicky Morgan, MP, linking it to the MEA report which includes the names of the 10 MPs, and a link to virology blog where the rest of the signatories can be found.

ETA: MP

 

Yes, it's disappointing, again not a single doctor or other person from Germany (apart from the charities). My impression is that the team at the Charité is under pressure and maybe isn't in the position to openly engage in "activism". Maybe we could ask the two or three private doctors who treat pwME (don't know if they were asked and have never been in contact with any of them).

 

No I didn't. I'm guessing not, but is there anything any of us can do to assist with this?

 

I agree that the more people with academic qualifications the better. However, I think weight will be added by those specifically NOT involved in ME research or treatment. Michael Sharpe has just accused the signatories of finding psychological research unwelcome. The less the chance of accusing signatories of conflict of interest the better. Researchers like Julia Newton who do ME research as a bolt on to more general interests probably also carry weight but those who push unproven treatments or sell assays are probably best avoided.

 

What about using that BMJ rapid response forum to put out an open invitation for more signatories?

I don't see why there shouldn't be an open campaign at this point. If there is injustice in any other sphere of life, people mount a campaign against it, and rightly so. It's only in the heads of the PACE authors that 'campaign' is a dirty word.

 

I have received replies from both Ed Davey and Nicky Morgan, MPs.

Since we hope to have a debate in the full house, and will need as much MP support as possible, I think it is worth making every effort with MPs. David said that he had contacted them a second time but didn't gain any new ones, so I think we all need to all be contacting any MPs we might have links with.

Link to the Times or MEA is useful to add.

 

I would do it more gently than that. Maybe just "if anyone is interested in adding their signature then please contact ... for further information."

 

I agree. That's also my impression. Sadly.

I could ask Prof. Huber, also I could point Dr. Bieger to the letter. Please give me a go.

Edit: But still, I could ask someone at the charité.

Edit2: There's also a Dr. Pfeiffer in Berlin. What about him?

 

Sounds great! I started a thread in our German section, where we could maybe work on this little project.

Thanks for the reminder @Sly Saint, I wasn't aware that signatures can still be collected.

 

I would prefer not to have the private docs involved, seconding @Jonathan Edwards' point:

btw, never heard of Dr. Pfeiffer - do you have a link, @Inara ?

 

Do we know whether they have been asked yet?
@dave30th, did you contact Carmen Scheibenbogen and her team? ( https://me-pedia.org/wiki/Carmen_Scheibenbogen )

 

I'm the admin for ME Action England South West and one of our members met with Thangham Debonnaire last week who said that because she was an opposition whip she would be unable to sign the letter to the Lancet (or sign up to MAIMES), so other PPSs/whips/ministers may say the same. A few other members have been contacting their MPs about the letter but are yet to recieve a response. I meet with my MP Darren Jones on the 21st September and am hopeful that he might sign - especially as he is a member of the Science and Technology Select Committee along with Carol Monaghan which recently carried out a general investigation into research integrity. Carol Monaghan mentioned the PACE trial on at least a couple of occasions during that investigation.

 

Yes my MP is one of these. I've forwarded the MEA link from 24th Aug since I felt it gave a good summary and labelled it something like Increased International awareness of of inappropriate medical care of ME/CFS patients. I sent it to his senior adviser since I never usually get much of a response from his parliamentary secretary. Plus I asked what my MP was doing to assist this. Ho hum. Probably nothing will happen but I've got nothing to lose.

 

Where did he make this accusation? I'd like to read it, if possible.

 

In his response to the BMJ piece on the BMJ article thread.

https://www.s4me.info/threads/bmj-p...ew-“flawed”-pace-trial.5444/page-4#post-98784