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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...

Always good to see researchers taking the randomised aspect of ‘randomised controlled studies’ seriously (not).

Also it is a complex issue teasing apart migraines as a symptom of ME and migraines co occurring with ME. I get migraines when in PEM and I see them as a symptom of the PEM, their frequency, duration and severity are associated with the current severity of my overall ME. However I also get...

I hope they are still going as support for families facing inappropriate child protection enforcement when professionals refuse to believe in the reality of ME is so vitally important. At least with the new NICE guidelines it should be easier in theory for parents to refuse GET here in the UK...

Great to see the numbers signing this petition. Also the comments added strike me as particularly powerful in their sheer number, hammering home the issues of PEM and that exercise therapies harm. Does change.org display the number of comments anywhere?

My understanding is that the letter has already been sent in order to reach Cochrane before their September meeting, though people can email S4ME if they want their name added to the online version. Presumably we will present the petition separately to Cochrane at a later date in order to...

Worse it is treated as definitively ruling in a psychosomatic cause.

Though it is interesting to ask how effective is Cochrane as an organisation, and how dependent is the review process on authors misusing the review process to promote their own vested interests through biased reporting, I am not sure S4ME should be analysing in any depth reviews that are not...