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I think you have to read it in the specific context - ForwardME meetings with government. Not complaining has resulted in the system steamrollering through. The argument was that we had to play things their way because that will get the best results. Fortunately, at this late stage, banging on...

Is BACME part of ForwardME? We never seem to have BACME people on the working group.

It has been an argument against EBV vaccination for as long as the virus has been known about. EBV is a very peculiar virus in the way it parasitises the immune system. It might be possible to prevent it getting hold but the logistics and ethics of any study are daunting.

These people are not part of ForwardME, they were invited in to the meeting by DHSC.

Basically yes. It was pointed out right at the beginning of the meeting that the process was not co-developed' as was promised. There was time for people to put their foot down but they didn't (Annette tried her best). There seemed to be an acceptance that what we would get would at least be...

The woman who seemed to be in charge of the actual planning at DHSC mentioned talking to service provider leads, which would presumably be Anna Gregorowski, Yorkshire clinic, Vikki McKeever etc.. I go the strong impression she was aiming to make it clear that she had no reason to change tack at...

Binita Kane endorsed my call for physician delivery but went off at a tangent talking about how she had had to move to the private sector. Presumably because she had no resources in the NHS. Annette Barclay made the same points I had, very clearly. But there was an overall sense that the...

A very well presented session with a lot of good material. Chris was excellent. Stephen Holgate seemed to me to muddle things up a bit but probably to no great harm. The woman from Imperial seemed quite sensible although I didn't get much impression of focus. We have had Norwich looking at...

No comment.

It is such a pity that people writing stuff like this do not realise to what extent they are shooting themselves, and in the process everyone else with ME/CFS, in the foot.

The question was framed with the premise that the drug was working through NK cell gamm interferon. For all we know the reason for non-responding might have nothing to do with cell numbers - that might have been a fluke.

https://www.theguardian.com/society/2026/feb/24/my-maddening-battle-with-chronic-fatigue-syndrome-on-my-worst-days-it-feels-almost-demonic Rather long article mentions brain retraining, which ultimately fails. Not sure quite what the message is but the Guardian seems to be more open to giving...

And lower expression might indicate a normal response to something else rather than 'dysregulation' I suspect.

Yes, and I don't see it as necessarily impossible. I think the letter to BACME will sink in at least with some. They have been trying to pretend they have a therapy but it must have been a bit of an act, in comparison to the days when it made sense to treat deconditioning with reconditioning. I...

The chair of BACME.

About 30. It was very carefully stage managed. About 10 advocates had a chance to speak and replies were highly selective. Unfortunately a lot of the 'advocates' went off on tangents that are likely to have left the DHSC thinking that we did not have any act together. Not all though. Some people...

So's mine, with all this. No way was offence taken.

I think it is both and significantly the latter. I worry that people with mild or past ME/CFS get involved in advocacy and think that just asking for more, like Oliver Twist, is enough. They don't seem to realise that it requires knowing what is edible.

Of course. I was being flippant, in the context of a second major UK public figure being arrested under this charge today. The crime here seems to be more the adherence to the political requirements of said public office. And incompetence in public office. But I don't think either are on the...

That sounds right.