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Some couriers have a ‘leave safe’ option, where you can specify where you want the parcel left, though this would only work with contentious [sorry should read ‘conscientious’] drivers. I know of a number of friends that get parcels left in sheds left unlocked, another has parcel space set...

In relation to BACME, who are more likely to be clinicians working with face to face patients, rather than the great and the good of research and service planning who have repeatedly failed ample opportunities to address the research issues, I suspect the idea that rehabilitation necessarily...

I suspect this belief that psychological experience can change reality, in this case generate physical/biological symptoms, is a design fault in the human psyche. Lots of people are prone to go along with ‘if you believe enough you can change the world’, it is something populist politicians and...

I don’t know if there is any recent research of the impact of paying participants of the results of an experiment. All I can remember is slightly tangential to the current issue. A study looking at ‘cognitive dissonance’ involved a deliberately pointless and boring psychological study and then...

Not sure how much credibility to give this research, but it would be possible to raise the old split between art and craft. A magician first and foremost must develop practical skills whereas for example with a painter skill is seen as secondary to creativity. For example Canaletto is seen less...

To be fair it may depend on what components of Long Covid an individual has, for example someone who experienced lung damage at the acute phase may benefit from traditional relevant rehabilitation, though I doubt there is a lot of research evidence yet, however anything not starting with a...

So to purportedly remove their perceived gap, they create a new gap which, for the children with a missed biomedical condition that fall through into the FND gap, might be even harder to escape.

This is an issue I know nothing about, but wonder if this is a situation that aligns to what we argued for in relation to the NICE guidelines review. That general support may be required but that it would best be provided by a specialist nurse who could respond to medical issues, practical...

My joke that we would need to complain that Cochrane’s response to our complaint was in breach of their own complaints procedures was perhaps not as far fetched as I first thought. It seems that Cochrane has decided that we are not a group that they intend to meaningfully respond to at all...

There is an interesting discussion developing on the comments thread at Hilda Bastian’s blog much of which involves members here https://hbprojecttalk.wordpress.com/2023/11/10/welcome/ (also linked to above). If you go to that page and get what looks like a blank page, clicking on the title...

I suspect the big issue is not timings, rather that any of the complaints/concerns about the 2019 Review were either ignored or responded to with the reply it would all be fed into the IAG, whereas the pro 2019 review objections to any replacement review process even happening resulted in...

When do we start submitting complaints about Cochrane’s Complaints Team’s failure of process?

I thought that was possible, but looking at Google Scholar I can’t see how to do it other than looking at each citation in turn. This could be my ME brain, or it could be that you need to use a different search engine.

At least Cochrane are including patients/carers within the concept of ‘consumers’, though their current shenanigans in relation to the flawed CFS Exercise Review suggest they have a way to go to effectively put their policies into practice.

I had been surprised by the extent and reach of the citations, and this not only illustrates how these ideas have unjustified creep into other conditions but also illustrates how deeply engrained they have become in the post viral conditions literature. For me this strengthens how vitally...

I am not sure that CFS was ever ‘aetiologically neutral’, despite being presented as such in the 1980s and 1990s. It was used to distance from the label ME which was seen as a biomedical condition and I suspect always contained the unspoken inference that CFS was definitely not biomedical, so...

It feels a life time ago. I had a great sense of achievement getting there, it was the first such event I had been able to get to for a number of years. @dave30th ‘s clear setting out of the flaws in the PACE methodology gave a sense of optimism, though sadly PACE itself still stands and other...

Thank you for all the hard work still being done, especially in contacting interested patient groups. There must be nearly 100 now supporting our open letter. Sorry to preach to the converted, but … Just think that it took a number of years of comments, concerns and complaints through the...

When medication has a dramatic effect you can probably rely on unblinded self reporting, the problem is with something that has a slight effect or no effect. I suspect trying to blind yourself would just get too complicated, wouldn’t it be better trying to focus on either objective outcomes or...

The SMC’s past coverage of ME/CFS, though recently more balanced, for years promoted only researchers with a narrow partisan approach to research and actively sought to protect those scientists from valid methodological criticisms, even participating in the active vilification of an entire...