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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...

I just looked back at Cochrane version history for their exercise reviews (see https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD003200.pub8/information#versionTable ) and was reminded that this has been going on not just since the publication of the current revised version in October...

Although superficially conciliatory this letter yet again fails to address any of the substantive issues raised in our recent communications and the petition, rather it just repeats the previous 2020 failure to address the issues fobbing off serious complaints about their failure to adhere to...

Excellent news, given Long Covid services are still being developed and many health planners are drawing on this obsolete Cochrane CFS exercise review to implement interventions that will be harmful for those Long Covid patients experiencing PEM. It is vital that this review is withdraw or we...

What an intellectual and linguistic mess. One could write an essay on what is problematic in just these two paragraphs, but here are just a couple of responses: Firstly the idea that ‘long-Covid’ (note the use of a lower case ‘l’, which immediately devalues the concept as an identified...

The majority of signatories come from UK, New Zealand, Australia, USA and Canada which perhaps represent a linguistically and culturally narrow grouping. However I am unsure whether this relates to how we present/market the petition or how potential signatories perceive its relevance/importance...

Bear with me: ‘Hypothesis- Fairy godparents are invisible intangible beings that act beneficially on a quantum level in people’s lives’. I was wondering about devising a study looking at fairy godparent activity levels in people’s lives and it strikes me that this Central Sensitivity Inventory...

Normally I am resistant to conspiracy theories, given laziness, stupidity or wilful blindness arising out of self interest are much more likely explanations, however given we saw in the NICE ME/CFS guidelines review process a senior member of a British medical Royal College seeking to pressure...

To be guilty of stating what, to our members, is the obvious, but … … … I too have read all the comments at least once and some several times. They do make, as @Trish said, ‘a powerful testimony’. A very clear counter to those high profile exercise advocates who say ‘they have patients who...

@SunnyK, yes it gets very difficult to work out what is happening when more than one thing is happening at the same time, what is PEM, what is issues relating to specific food stuffs and what is other conditions, especially as each factor can have a knock on effect on the other. The...

You have my sympathy. I had a brief episode of IBS like symptoms following an episode of salmonella poisoning before my ME onset, but then the symptoms re emerged with a vengeance associated with the onset of my ME. For many years I did not establish a clear pattern, though they did vary with...

Is it worth asking BACME if their information on the Cochrane pausing the review is in the public domain or not, as our members who have contacted Cochrane have not been told this, and if so could they point us to the source? [Added - Sorry had not read the posts above raising this before posting]

I am not up to re reading the new NICE ME/CFS guidelines at present, but wonder if the Hospital Trust’s refusal to provide any nutritional support, either inpatient or domiciliary, unless Karen agrees to admission to a multi patient ward and without her main carer being allowed 24 hour access...

Presumably it would be possible to do a randomised control trial amongst people who believe LP can cure them. You would identify people who believed then randomly assign them to LP and a control arm, but you would have to ensure those in the control arm also believed that the control activity...