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If the doctors associated don’t prescribe (many who are severe, in contrast to what may be accepted here, do want to access to off label meds) and the waiting lists are very long and it’s all remote & it has capacity to cater for a very small number even if all who want it can afford it, what...

like trying to make the stigmatised & untaught m.e research field flourish and compete unaided , this has already been tried and demonstrably failed. What is the logic behind carrying on? What notice do ICB take of the fact that most are currently providing no severe ME support At all. None...

Trump withholding university funds until they please him mentions Columbia Trumps covid cuts https://www.bmj.com/content/388/bmj.r636/rr

Details of DC protest

Totally unacceptable isn’t it? I mean what a joke

I wrote this on their Facebook: Regarding research, are you just counting long Covid research as being a worthy and full substitute for m.e research? “Save our science“ sounds likes a conservation effort & that M.E has a lot to lose, rather than pre-Covid M.E being in a state of scandalous...

the ministers representative response the palm of the hand https://carolinelucas.com/sites/carolinelucas.com/files/ML.N0070.CM_.13.7.18.reply_.pdf

Caroline wrote this excellent letter to minister brine in 2018 https://carolinelucas.com/caroline/parliament/letter/mecfs-is-a-complex-and-often-misunderstood-disease-that-affects-250000 it is regrettable Sussex org has any influence on these green MPs

https://www.newstatesman.com/podcasts/insight-podcast/2025/03/are-we-living-through-an-overdiagnosis-epidemic Long section on Lyme disease in this one. It was really frustrating to see progressive left journalists without experience of being sick or being a doctor thinking it was so cool and...

I think what’s listed are core features in terms of mangement. Personally spasticity is a big issue for me that’s not really covered in any literature at all, likewise central sleep apnea which has made it difficult to tolerate any meds. I’ve had several friends/ acquaintances in extreme pain...

Following up on this I decided to trace the evolution of the severity definitions used in official UK literature because I do not feel they are accurate or a true reflection 1) Findlay Cox Cox DL, Findley LJ. Management of chronic fatigue syndrome in an inpatient setting: presentation of an...

Ah well if you are right, it will probably be announced on ME awareness day. Dr s has said he’s not aware of any UK trials regarding LDN so I’m pondering what other drug the MEA has shown any interest in

Thanks I didn’t read right through. I’m surprised it is just top up funds as Dr Charles Shepherd has been hinting at an exciting drug trial and I thought that it would be new. I also don’t think its findings are going to be that relatable to people like myself and the long term ill with m.e...

looks like the intention is set. What a ride they've taken us on. It didn't take three years for the funders to decide to offer more unspecified support to researchers to produce more high quality applications and the MRC have been banging on about the need for this for years. This was...

the ME association is funding a drug trial of lOW Dose Naltrexone on those with long Covid for three months who meet ME Criteria https://meassociation.org.uk/2025/04/leading-uk-charity-invests-in-canadian-trial-of-drug-treatment-for-me-cfs-and-long-covid/

Except the glaring error of this NICE definition that is too restrictive, based on a paper from the 1990syet copied and pasted into UK literature with variations but apparently zeal and devotion yet hs no bearing on reality in terms of being accurate afaic which is then potentially...

I think that this post on Action for ME sums up the position of many patients who've been waiting for progress a long time and met an unacceptably indifferent response: Michael Van Zattern:

More here:

To me it feels like something is missing and another system has had to step in and take over but that system can’t let you relax in any way. Cruelly it gets worse the more over tired I get and I feel there’s something instrnsically different in people who have this presentation vs the people...

this reminds me of when you watch Budget TV & they try to show you how you can have a good time or make things without spending any money, are they still implying we can quickly turn the whole field from barely any research and no treatments and little progress over thirty years around,without...