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

Sly Saint said:
What about Carmen Scheibenbogen ?
maybe something our German Group could look into?
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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).
 
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dave30th said:
But if people know of individual experts (we defined that for purposes of the open letter as people with scientists/academics with doctorates, and doctors, and some others with so-called 'terminal degrees' like lawyers)
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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.
 
Jonathan Edwards said:
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.
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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.
 
Sasha said:
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.
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It's a demarcation dispute. The PACE and BPS crowd are the only ones allowed to campaign, according to the PACE and BPS crowd.
 
Joh said:
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).
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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?
 
Inara said:
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?
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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.
 
Inara said:
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?
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I would prefer not to have the private docs involved, seconding @Jonathan Edwards' point:
Jonathan Edwards said:
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.
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btw, never heard of Dr. Pfeiffer - do you have a link, @Inara ?
 
Joh said:
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".
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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 )
 
NelliePledge said:
those MPs who have previously said they wont or dont* sign EDMs could be approached again and asked to sign this letter because it is not an Early Day Motion

*(anyone who is a Govt Minister or minister's assistant (Parliamentary Private Secretary) doesnt sign EDMs by convention as they are a means for back benchers to flag up issues. The opposition Front Bench team do not sign either, some MPs use the excuse of previously having been a Minister although this is irrelevant if they are actually on the back benches. Other MPs use a standard response that they dont bother with Early Day Motions because they have no legislative force - which in the case of the PACE trial is a complete red herring as the EDM is being used as a means of the legislature holding the administration to account and which does not require legislation).
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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.
 
NelliePledge said:
those MPs who have previously said they wont or dont* sign EDMs could be approached again and asked to sign this letter because it is not an Early Day Motion

*(anyone who is a Govt Minister or minister's assistant (Parliamentary Private Secretary) doesnt sign EDMs by convention as they are a means for back benchers to flag up issues. The opposition Front Bench team do not sign either, some MPs use the excuse of previously having been a Minister although this is irrelevant if they are actually on the back benches. Other MPs use a standard response that they dont bother with Early Day Motions because they have no legislative force - which in the case of the PACE trial is a complete red herring as the EDM is being used as a means of the legislature holding the administration to account and which does not require legislation).
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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.
 
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