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uab9876.bsky.social @uab9876.bsky.social · 09/10/2026

It was so obvious that they were manipulating results what is shocking is how many academics supported them in doing that.

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uab9876.bsky.social @uab9876.bsky.social · 21/09/2026

No healthcare or contact with doctors so no offers of any treatment. Many patients are simply ignored and invisible to doctors. (and avoid doctors as they offer nothing positive).

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uab9876.bsky.social @uab9876.bsky.social · 25/02/2026

There are 400k people in the UK with ME/CFS many will be house bound an unable to work. Long Covid also many with similar symptoms. No treatments so NHS can do nothing. V. little research and MRC refuse to act to increase research. So back to work strategy is unrealistic in both short and long term.

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uab9876.bsky.social @uab9876.bsky.social · 23/02/2026

There is also a question as to who has reviewed those parts of module 3.

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uab9876.bsky.social @uab9876.bsky.social · 13/02/2026

I think there are now questions in the medical school exams so that medical students need to learn something about ME.

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uab9876.bsky.social @uab9876.bsky.social · 10/02/2026

If I remember correctly, the first module is more widely available and the 2nd and 3rd modules were restricted to the NHS. Although that may have changed for the 2nd module.

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uab9876.bsky.social @uab9876.bsky.social · 05/12/2025

The question needs to be asked as to why the MRC are so reluctant to build UK ME research capacity. They are reluctant to do any funding despite ME being a huge issue (400k people in the UK).

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uab9876.bsky.social @uab9876.bsky.social · 03/12/2025

How about asking DSIT why the research councils refuse to invest long term conditions such as ME that cost the country huge amounts of money yet practically no research into treatments. An investment now could lead to large future savings.

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uab9876.bsky.social @uab9876.bsky.social · 06/08/2025

Yes they should have planned for such studies during the pandemic. There was an observatory project perhaps from Kings - did that come up with anything?

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uab9876.bsky.social @uab9876.bsky.social · 06/08/2025

Do we need to that or just look at grouping symptoms from either groups (LC feels like an artificial construct anyway). Does it matter the proportion of people with LC with ME symptoms? Better to spend research money on understanding the biology.

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uab9876.bsky.social @uab9876.bsky.social · 06/08/2025

Would better evidence change policy? The number with of LC patients with ME symptoms + ME patients are large enough by any estimate for governments to take ME seriously (just ME patients are a large enough group). In the UK MRC are demonstrating they are not fit for purpose by ignoring the problem.

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uab9876.bsky.social @uab9876.bsky.social · 06/08/2025

There are other papers such as this one by Jason pmc.ncbi.nlm.nih.gov/articles/PMC... I suspect all the methodologies are somewhat flawed Jason recruits from social media. May be better to review medical records but I wouldn't trust doctors to record info correctly

pmc.ncbi.nlm.nih.gov

ME/CFS and Post-Exertional Malaise among Patients with Long COVID

This study sought to ascertain the prevalence of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) among a sample of 465 patients with Long COVID. The participants completed three questionna...

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uab9876.bsky.social @uab9876.bsky.social · 01/08/2025

How would cochran's management justify their actions (and lack of them) in a public enquiry when the harm they have caused is obvious? Would they be happy to do this? If not then they know the issues. Their unwillingness to communicate suggests they are not proud of their actions.

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uab9876.bsky.social @uab9876.bsky.social · 01/08/2025

The only rational conclusion is that they either want to cause harm or are happy to cause harm to meet beliefs of some members. If they weren't they would act they have had plenty of chances. They should watch videos of senior post office managers trying to justify their actions in their scandal.

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uab9876.bsky.social @uab9876.bsky.social · 01/08/2025

Also if Cochrane's policies allow them to publish reviews that are clearly bad (and this one is) then their policies are at fault and need changing (that is what for example quality management processes say). In the end this comes down to Cochrane's managements desire to harm patients.

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uab9876.bsky.social @uab9876.bsky.social · 01/08/2025

Has anyone written to the ASA as their claims that reviews are high quality are clearly wrong. Also this shows they don't care about quality just getting the politics right for senior people in Cochrane.

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uab9876.bsky.social @uab9876.bsky.social · 31/07/2025

Lets face it the government published a plan for PwME but are not acting on it to protect patients. And plan is a failure on research so governments policies of getting people back to work will fail (down to DSIT as they control discovery research).

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Reposted by @uab9876.bsky.social

sarah boothby @swastrosarah.bsky.social · 31/07/2025

Isla's mother has been arrested under suspicion of causing her death from ME last year (heart failure). There was no inquest. Isla's younger sister (15), who also has ME, has been removed from the only people who understand how the disease must be managed. Imagine her fear. #MEKills #HumanRights

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uab9876.bsky.social @uab9876.bsky.social · 29/07/2025

Did they do anything to try to measure exertion before the first sample and exercise test. It could be that getting to the place where tests are carried out etc already is considerable exertion therefore reducing the effects of an exercise test

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uab9876.bsky.social @uab9876.bsky.social · 28/07/2025

AI is changing the advertising model as well. If a search engine summarized result into something readable using multiple sources then individuals don't click to go to pages and hence don't see (and click on) adverts.

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uab9876.bsky.social @uab9876.bsky.social · 28/07/2025

I think that is full sequencing costs? Where as decode looks at a limited set so that it can be done over a large population. I think their SequenceME proposal is intended to do more comprehensive sequencing

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uab9876.bsky.social @uab9876.bsky.social · 27/03/2025

If other reviews follow similar bad patterns we should expose them.

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uab9876.bsky.social @uab9876.bsky.social · 13/03/2025

The question to Cochrane should be will they put their money behind the review and pay damages to people who are harmed due to doctors relying on a review that they know is flawed. Same question to the company who publish their reviews.

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uab9876.bsky.social @uab9876.bsky.social · 20/02/2025

I think it means that if they have proposals with equal scores and limited budget the ME ones will be seen as priority and funded first. Problem is we need to build capacity (i.e. get more researchers involved and hence more research proposals).

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uab9876.bsky.social @uab9876.bsky.social · 10/02/2025

Do we know if she knows/has views on ME or Long Covid

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uab9876.bsky.social @uab9876.bsky.social · 06/02/2025

How can anyone trust cochrane to improve methods, They are an organization that seeks to represent the prejudice of their members not science. We have seen that with ME and I suspect will find it looking at other Cochrane output. Cochrane needs to close down.

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uab9876.bsky.social @uab9876.bsky.social · 29/01/2025

The training courses were mainly done before Andrew Gwynne took over. The issue isn't him.

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uab9876.bsky.social @uab9876.bsky.social · 25/01/2025

Why the shock they have behaved badly for years?

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uab9876.bsky.social @uab9876.bsky.social · 25/01/2025

I'm wondering why anyone thought they would behave well and actually do the new review? They clearly wanted to keep up a bad review when they started and have been in no hurry to change. They won't improve until people start questioning their overall editorial integrity and other reviews.

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uab9876.bsky.social @uab9876.bsky.social · 24/01/2025

Hilda gave cover for cochrane doing the wrong thing for 5 years

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uab9876.bsky.social @uab9876.bsky.social · 24/01/2025

Lets not forget that retraction watch were conned by the pace authors into supporting them

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uab9876.bsky.social @uab9876.bsky.social · 24/01/2025

She has given them cover for 5 years doing this whilst they fail to produce a new review. Cochrane should have withdrawn the old review and acted swiftly. How long does a typical review take. We should look at other reviews - do they stand up to examination or is Cochrane just a political org,

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