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Scientists and patient organisations call for retraction of PACE recovery paper - open letter

"Also of note that Action for ME aren't on that list of signatories, not that I'm surprised by that.

ETA: I've shared it to their Facebook page, asking them to add their name to the list..."

@AndyPR


Just read on AfME fb page a response to above saying that they weren't invited to sign. Could someone arrange for a late signature? Don't want them to have that excuse.
My reply to their reply was
Thanks for the reply. As their last open letter on the subject of PACE had signatories added after publication I hope you would make contact to add AfME to the list. Contact email for the Virology blog is virology@virology.ws
 

Invisible Woman

Senior Member
Messages
1,267
I am deeply grateful to everyone who signed that letter.

It is disappointing that not all professionals who agree with the contents of this letter feel that they can sign it. I agree that professionals should stand up for their patients but...

I can also see that if a doctor feels that his/her position would be undermined this poses a problem:
if they lose their position or are prevented from treating & supporting their ME patients then who will?

It's not just about medical treatment either. Doctors provide written evidence to support benefit claimants and get support from social services. They can also provide some protection from inappropriate interventions by other docs and social services.

I don't think that all of the doctors who felt unable to sign will necessarily be putting their own interests first, although some may.
 

hixxy

Senior Member
Messages
1,229
Location
Australia
Question for someone who is more familiar with the names signed on the letter: How many of them are from outside our usual community / supporters? Are there any prominent non-ME/CFS researchers or doctors putting their name on the letter?
 

user9876

Senior Member
Messages
4,556
Doctors have a duty under the GMC rules to stand up for harm being done to patients. The government and GMC also has a new duty of candour imposed on doctors. In fact if doctors are in agreement but do not speak out they are in breach of duty.

The problem is that the GMC are more likely to punish those speaking out than those acting badly. There are too many old boy networks willing to mislead patients rather than get their house in order.
 

user9876

Senior Member
Messages
4,556
Question for someone who is more familiar with the names signed on the letter: How many of them are from outside our usual community / supporters? Are there any prominent non-ME/CFS researchers or doctors putting their name on the letter?

I counted about 31 names I didn't recognize. But others are not from the ME community - for example people like Prof Stark as far as I know has no research (or other) interest in ME but is just shocked by PACE and the bad methodology. He was one of the statisticians who posted the original re-analysis on the virology blog.
 

antherder

Senior Member
Messages
456
The problem is that the GMC are more likely to punish those speaking out than those acting badly. There are too many old boy networks willing to mislead patients rather than get their house in order.

I am always reminded of poor Semmelweis, who paid so dearly for suggesting his colleagues were spreading infection by not washing their hands between patients.

Many thanks, @user9876, for posting this. Has significantly brightened my day!

Edit: And thanks to all those who signed the letter, of course. In my excitement, I forgot that bit. Doh...

(See my signature for a suggested protest song...)
 
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Invisible Woman

Senior Member
Messages
1,267
I was thinking that supporting their ME patients means signing the letter.

I mean in day to day terms: sleep & pain management. Advice on pacing.

There are lots of ways we need support. I agree that signing the letter is one of them and a very important one at that.

If a rheumatologist or endocrinologist, for example, are told they can no longer treat ME/CFS patients there are still plenty of other patients within their speciality they can treat. Their mortgage will still be paid. But what about their patients?

When I was diagnosed there were two consultants who had a special interest in ME. One was a strong proponent of the BPS school and felt that no additional tests or rule outs were required and was not supportive of patients claiming benefits. The other consultant believed in a physical cause, ruled out other conditions, gave advice and treatment for symptoms and pacing. Luckily, my GP sent me to the second one, but in this scenario if my diagnosing consultant was restricted from ME patients then I would have been in deep trouble.

Things just aren't as black and white as we would like them to be.
 
Messages
2,087
Things just aren't as black and white as we would like them to be.
I know where you are coming from, but did it cross your mind that the reason there are so many doctors like the first one you describe is because too few of the good doctors are willing to speak up?

It may not be black and white but treating a handful of patients at the expense of a population of patients does not seem just to me.

I would go so far as to say there is no such thing as a good doctor who is afraid to speak up. They are not serving the patients as best they could.
 
Messages
2,391
Location
UK
They're all sticking their necks out for us and they didn't need to.
I think they are also acting according to their own consciences, and demonstrating the good scientists and individuals they are. In effect the PACE scandal shames scientific research, and I imagine many good scientists feel "shamed by proxy" because of it. I am sure many of them feel compelled, from sheer human decency and professional integrity, to try and right the wrong as best they can.
 

Yogi

Senior Member
Messages
1,132
Also of note that Action for ME aren't on that list of signatories, not that I'm surprised by that.

ETA: I've shared it to their Facebook page, asking them to add their name to the list...

And their little side kick sibling AYME.

https://autodidactauthor.wordpress....ls-forbidden-fruit-ayme-make-final-statement/

Remember PACE trial was done with AFME's help.

All the smart and informed people knew that AFME and AYME are lobby groups for the bps school and wessely, sharpe, white posing as ME charities. Why does anyone still support these FAKE charities is beyond me? We need to ensure that no ME patients are duped into supporting FAKE charities. We need to take them down as well as Pace trial. Drain that swamp once and for all!!.

I don't want and we do not need FAKE BPS lobby groups help. PACE is coming down with or without FAKE and crooked charity/ bps lobby groups help.

It is good if they stood aside for all to see them in their true colours.

Thanks to Anton for asking . This post is not intended at you.


InActionforME responded:


Obviously you are a FAKE charity who are colluding with all the corrupt psychiatrists and good on them for not asking you.

Response thanks to Anton Mayer!


InActionforME responded:



"so if they want us to they can email sonya@actionforme.org.uk"

No, we or all these terrific scientists, doctors and real charities and Dr David Tuller and Dr Racaniello do not want your FAKE corrupt charities help and we dont need to beg InActionforME and CROOKED Sonya to sign.
 
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JamBob

Senior Member
Messages
191
I don't begrudge doctors who felt they couldn't sign the letter. Medicine in this country is highly conservative and conformist and the GMC are a nightmare when it comes to doctors who stray from the party line. Also the NHS is effectively a monopolistic employer so it is important for doctors not to be ostracised from their fellow professionals if they want to keep practising.

In thyroid medicine - the GMC and mainstream endocrinologists have hounded doctors who prescribe drugs other than T4 (one to an untimely death we believe). I wouldn't want to be on the receiving end of one of those tribunals as it is highly stressful. Just look at what Dr Speight was put through for having a different opinion on ME treatment.

I've seen a few NHS doctors who don't agree with the mainstream approach to things and they have helped me greatly "under the radar". I would never ask them to speak up though. In British medicine, as the Japanese like to say "the nail that sticks out gets hammered down".
 

Snow Leopard

Hibernating
Messages
5,902
Location
South Australia
Glad to see the letter, I hope that the editors of Psych Med see reason and don't bother defending the indefensible.

I know that there are doctors who are in agreement with the letter but, for various professional reasons, felt unable to sign the actual letter

Disappointing that this is the case...

The Editorial Board of Psychological Medicine

https://www.cambridge.org/core/journals/psychological-medicine/information/editorial-board


They include Sharpe, Wessely, Hotopf, Pariante.

Yes, it's hardly unbiased peer review when you are an editor for the journal of the paper you submitted.