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The value of vaccinations is measured in probability for whole populations, what we lack is enough knowledge about how to decide what are the probabilities of benefit or harm for us as individuals. Perhaps the levels of vaccination that has accompanied this Covid-19 outbreak could have been a...

It is so hard both to deal with the stress of such situations and the inherent power imbalance. My comment was not intended as a suggestion you should take action @BazzaBoyle , rather it was directed at the wider forum as a discussion point. At the time all you can do is focus on achieving you...

Give the NICE guidelines should an English institution that is part of the NHS be making a diagnosis of CFS rather than ME/CFS?

It is potentially very complex deciding which groups to include and which to exclude, though there is benefit in knowing about some groups affiliations they may not fit in with this thread’s initial intent, for example … Sussex & Kent ME/CFS Society: this has a disproportionate number of...

Very interesting.

Rather than saying Cochrane should never be a trusted source, rather it should be treated with caution as it is at risk of specific topic areas being hijacked by narrow groups of researchers seeking to promote their own self interest. The quality of individual reviews depends on the objectivity...

My feeling is that Cochrane has a long standing problem in its structure that allows a small group of researchers to hijack a topic area for their own self interested biases and beliefs. Obviously when the withdrawal of the previous draft of their exercise review seemed on the cards it...

A great letter, any response to this hopefully will give some insight as to whether we are looking at incompetence or deliberate obfuscation.

There is also the possibility that current psychiatric diagnoses do not correspond to real world categories. For example with ME/CFS the BPS, in their formulation of CFS, seek to lump people with diverse aetiologies together, which along with their obsession with the non specific symptom of...

An excellent article by a psychologist about the Oslo Consortium and the Lightning Process as faith based medicine. Here are a couple of extracts, as per Google Translate:

Note: the UK MEA has updated their website with information on the current booster vaccine rollout (see https://meassociation.org.uk/2023/09/the-me-association-covid-autumn-booster-vaccine-information-2023/ ) and also provide a template letter for people with ME not being automatically offered...

An advantage of change.org petitions is they accept international signatories. Signed.

Just searched the NHS website to see which Covid vaccine is on offer this season here in the UK, and found the following: It looks like if you just turn up for a vaccine you will be one of the three mentioned, but will have to take whichever of the three they have in stock on the day. So...

In case anyone else here in the UK like me is approaching the 65th birthday and was unsure if they are entitled to a Covid-19 vaccination in the current round, anyone aged 65 years or over by the 31st of March 2024 is entitled. I got the following email from the NHS this morning: Given I have...

Since 2020 Cochrane have used the prospective of this independent advisory group’s imminent ‘advice’ as a way of avoiding their own failure to address the serious problems with the existing flawed exercise review and the fact that its continued active status within the Cochrane library is an...

Such clinical groupings are not inherently negative. They can also serve to share good practice and promote good research. We are seeking to do the same when encouraging understanding of such as PEM and backing biomedical research into the same. The problem is when they serve to enforce a...

Comment on the petition: cathrine engsig 34 minutes ago Thank you from Denmark and the Danish ME Association. We support the petition on behalf of the patients who have deteriorated due to GET and CBT.

We are also seeing the creation of some at least FND specialist physiotherapists, speech & language therapists, etc, who then report their interventions as examples of good practice for more generalist clinicians to follow. This is part of establishing a pro FND clinical culture over and above...

Thank you @Hutan and @Trish for your positive response. I always regret not pre drafting posts like this in a separate word processor as I always end up with errors, doing any text this long pushes me to the edge of my cognitive capacity. My big concern here is what I posted, in addition to any...

As @NelliePledge points out above this feeble response gives us no idea if this resumption of action by the Independent Advisory Group would have happened any way or is a result of our open letter, but worse we have no idea if this represents a serious attempt to address what has gone wrong with...