MEAction: Our Community will Not Suffer Stigma and Distortion

Andy

Andy

Retired committee member
Last week was a difficult time for the ME community as we watched a few journalists deride and dismiss the medical concerns of an entire patient population: us, our friends, our families. Reuters is responsible for gaslighting millions of suffering people around the world.

#MEAction has emailed a version of this letter to every journalist and editor who published an article stigmatizing people with ME. We encourage the community to reach out to journalists and editors as well, focusing on the narrative outlined in our letter. It goes without saying that we also urge our community to remain calm and factual in responses, and to avoid ad hominem language.
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https://www.meaction.net/2019/03/23/our-community-will-not-suffer-stigma-and-distortion/
 
I query the statement in the letter re The Lancet's retraction of the Wakefield et al paper. As I understand it, Wakefield did not state there was a connection between the MMR vaccination and autism but merely recommended further investigation.
 
thank you, #meaction!

can we get [1] a right of reply, similar to or identical to this letter, [2] and/or a separate article with the same status as the original article, at reuters and the major media that printed it?

also, has anybody looked at, for example, whether uk hate speech laws apply to some of these attack pieces in recent years?
 
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Just a small point. The message means to refer to the UK ME Biobank, not the UK Biobank. The UK Biobank has been involved in one so far unpublished study on ME of some interest and may well be involved in further research but it is not the ME Biobank that has been working on ME for five years. The UK ME Biobank is not gathering data of thousands, just a few hundred.

It is quite important not to confuse the two because getting an effective strategy through MRC will require involving both and it is crucial that peer reviewers do not confuse them.
 
I like the letter but it may come a little close to confirming Sharpe's claim that the campaign against PACE is driven by wanting biomedical research rather than psychological research. If Reuter's were to ask Sharpe for a response he could say 'look, they admit that what they like is only biomedical research'.

To be honest I do not think Wessely, Chalder and Sharpe will be unsettled by the other research going on. It does not threaten them in any way. They are more likely to be unsettled by people pointing out that PACE is unusable. The argument against PACE is the argument against poor science, not a comparison with anything else, of whatever quality.
 
Jonathan Edwards said:
I like the letter but it may come a little close to confirming Sharpe's claim that the campaign against PACE is driven by wanting biomedical research rather than psychological research.
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The campaign isn't driven by this, but what is the problem with wanting biomedical research rather than psychological research? Patients want research to go in the direction they think is best and it's this one and there is nothing wrong with that.

The latest Chalder paper just demonstrates how low psychological research has sunk and it helps no one but a few people to pretend otherwise.

We can't allow Sharpe to dictate what behaviour is acceptable. We're going to decide that for ourselves.
 
Remember that anyone can volunteer to join #MEAction and help to produce articles like this, as several S4ME members have. I don’t do nearly as much as many others, but I like the fact that I can chip in as and when I feel able to, without any pressure or expectation.

Of course, there are other charities and organisations which members may consider joining too.
 
strategist said:
The campaign isn't driven by this, but what is the problem with wanting biomedical research rather than psychological research? Patients want research to go in the direction they think is best and it's this one and there is nothing wrong with that.

The latest Chalder paper just demonstrates how low psychological research has sunk and it helps no one but a few people to pretend otherwise.

We can't allow Sharpe to dictate what behaviour is acceptable. We're going to decide that for ourselves.
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I am simply putting myself in the position of a Reuter's administrator. Sharpe says the campaign is based on a preference for biomedical rather than psychological research. The administrator looks at the letter and sees that the critique of the psychological research is set off against claims of better biomedical research. Looks as if maybe Sharpe has a point.

The point for me is that the letter would probably be much stronger if it simply focused on the poverty of the BPS research - which is what the letter to the Lancet did, as far as I remember. Bringing in a contrast with biomedical allows Sharpe to claim he has evidence of how the campaigners think.

There in nothing wrong with wanting biomedical research but that is not a scientific argument in itself for suggesting that there should be more emphasis on such research. The arguments for that are more subtle.

I agree with the point about Chalder's research but that is the right argument, nothing to do with the biomedical issue.

My point isn't about Sharpe dictating what is acceptable. It is about allowing Sharpe to leave the Reuter's administrator saying ' Yeah, well it looks as if Sharpe has a point. He's an Oxford professor so he is probably right. Let's whitewash.'
 
Jonathan Edwards said:
My point isn't about Sharpe dictating what is acceptable. It is about allowing Sharpe to leave the Reuter's administrator saying ' Yeah, well it looks as if Sharpe has a point. He's an Oxford professor so he is probably right. Let's whitewash.'
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I understand the important point you’re making, but I think you’re being over cautious. The article doesn’t say that #MEAction is opposed to any other types of research, it just states the need for biomedical research. In fact, the article makes no comment on psychological research per se, so I think it would be wrong for Reuters or anyone else to infer from the article any objection to anything other than the type of low quality research which has led to “the false and damaging view that ME can be reversed by forcing patients to exercise or to think differently.”
 
Barry said:
Really excellent letter MEAction. Also, I will be interested to know more about @Annamaria's query, from an educational perspective.
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https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(97)11096-0/fulltext

https://www.autism-watch.org/news/lancet.shtml
"The Lancet has retracted publication of a 1998 paper [1] whose authors—led by Dr. Andrew Wakefield—suggested that the measles-mumps-rubella (MMR) vaccine might be linked to autism. The paper didn't declare that cause-and-effect had been demonstrated [emphasis added], but at the press conference announcing its publication, Wakefield attacked the triple vaccine; and he has continued to do so ever since.

Lancet's "official" retraction states:

Following the judgment of the UK General Medical Council's Fitness to Practise Panel on Jan 28, 2010, it has become clear that several elements of the 1998 paper by Wakefield et al are incorrect, contrary to the findings of an earlier investigation. In particular, the claims in the original paper that children were "consecutively referred" and that investigations were "approved" by the local ethics committee have been proven to be false. Therefore we fully retract this paper from the published record [4].

The paper remains publicly visible, but the online version displays the word "RETRACTED" in bright red letters on every page of the PDF version."
 
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Jonathan Edwards said:
Just a small point. The message means to refer to the UK ME Biobank, not the UK Biobank. The UK Biobank has been involved in one so far unpublished study on ME of some interest and may well be involved in further research but it is not the ME Biobank that has been working on ME for five years. The UK ME Biobank is not gathering data of thousands, just a few hundred.

It is quite important not to confuse the two because getting an effective strategy through MRC will require involving both and it is crucial that peer reviewers do not confuse them.
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Thank you!
 
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