@uab9876.bsky.social
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).
December 5, 2025 at 11:53 AM
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).
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.
December 3, 2025 at 6:15 PM
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.
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?
August 6, 2025 at 9:29 AM
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?
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.
August 6, 2025 at 9:27 AM
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.
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.
August 6, 2025 at 7:53 AM
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.
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
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
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...
pmc.ncbi.nlm.nih.gov
August 6, 2025 at 7:49 AM
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
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
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.
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.
August 1, 2025 at 8:10 AM
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.
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.
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.
They should watch videos of senior post office managers trying to justify their actions in their scandal.
August 1, 2025 at 8:01 AM
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.
They should watch videos of senior post office managers trying to justify their actions in their scandal.
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.
August 1, 2025 at 7:39 AM
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.
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.
August 1, 2025 at 7:35 AM
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.
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).
July 31, 2025 at 2:29 PM
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).
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
July 29, 2025 at 8:15 AM
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
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.
July 28, 2025 at 1:16 PM
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.
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
July 28, 2025 at 9:59 AM
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
If other reviews follow similar bad patterns we should expose them.
March 27, 2025 at 8:30 AM
If other reviews follow similar bad patterns we should expose them.
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.
March 13, 2025 at 10:27 AM
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.
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).
February 20, 2025 at 5:09 PM
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).
Do we know if she knows/has views on ME or Long Covid
February 10, 2025 at 4:21 PM
Do we know if she knows/has views on ME or Long Covid
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.
February 6, 2025 at 1:11 PM
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.
The training courses were mainly done before Andrew Gwynne took over. The issue isn't him.
January 29, 2025 at 10:15 PM
The training courses were mainly done before Andrew Gwynne took over. The issue isn't him.
Why the shock they have behaved badly for years?
January 25, 2025 at 9:36 AM
Why the shock they have behaved badly for years?
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.
January 25, 2025 at 9:33 AM
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.
Hilda gave cover for cochrane doing the wrong thing for 5 years
January 24, 2025 at 11:36 PM
Hilda gave cover for cochrane doing the wrong thing for 5 years
Lets not forget that retraction watch were conned by the pace authors into supporting them
January 24, 2025 at 11:35 PM
Lets not forget that retraction watch were conned by the pace authors into supporting them