Ensuring people aren’t sold snake oil or rainbows to chase, is one thing, blanket prohibition is another.
The most severe may follow potential meds. with more interest than service leads, whose primary focus is the diagnosis and management of the mild-moderate. People often seek medical input precisely because they are keen to try things beyond pacing and diagnosis, for POTS, Abilify, LDN, even melatonin is off label.
In my case, I read about Immunivir in MEA literature and we asked my m.e consultant who hadn’t heard about it, his background was haematology, and then, due to extremity of circumstances and absence of anything else, he looked into it & agreed. All the meds, (bar anti depressants which drs hand out willy nilly) I have tried -acyclovir; Immunivir; modafonil; baclofen; amantadine; Abilify and clonazapam were accessed, some nhs, after me asking, but were not dished out, eg Amantadine was accessed via the gp getting approval from a neurologist, who had experience with the med.
Afaik there’s never been clinical trials for m.e in the UK and none underway. I never saw them discussed in the cMRC collaborations. Afaiu, the NIHR drug repurposing is for one project of up to £200k which will have 18 months to design a trial design for min 2 drugs. This clinical trials proposal would then be reviewed in 2027, with no guarantee of success, and then after that process, a trial of 1:2,3? drugs will go ahead, probably in one centre, completing around 2030/1
In my view, It’s unrealistic for the long-term very severe to just wait with nothing. Those Existing between the rock & the hard place should be heard. No one wants to dabble in unlicensed drugs, but nor do we want to languish or decline. The broad decision should be based on consultation of the severely affected and doctors who have been involved in their care, but I personally believe there should be doctors who are allowed to make clinical choices.
Afaiu NHS compassionate off-label use is an option across severe and untreatable conditions, and no one who doesn't want anything would be encouraged to take off-label meds on nhs budgets.
The private sector prescribing doctors, offered as alternative is essentially 1-2 drs, and waiting lists are long, what if Dr Binita Kane goes off as Dr Claire Taylor has? Most of the patient criticism of Action for ME private healthcare is that the doctors can’t prescribe.
Obviously, if the DHSC delivery plan had agreed to funding the research Hub proposal or the James Lind Alliance priorities had been activated with a funding call, or MRC had done a very different research strategy for 20 years, people pushed into unresponsive severe ME would have more solid hope.
Edited to correct opening sentence
