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I am still connected so if they say any different I will let you know

Sorry yes Dr Strain. He wasn’t supposed to be talking about the PACE trial but he used that information to illustrate a point. He had gone off topic by talking about it but managed to give that brief info before he had to go back to what he was talking about. I think I have not conveyed it...

A couple of other things that I noted from today: - he said that they had changed the way they dealt with ME patients from 2017 which went against the NICE guidelines at that time. He said”guidelines were for people who don’t work every day in that field”. Ie a GP could go and look at them. But...

Sorry I didn’t reply earlier, I think this has been answered but yes. Up until last week she was prepared to attend the inquest but after requesting and reviewing the GP notes her psychiatric therapist then wrote to the coroner saying that giving evidence in person would trigger a major...

I think the fact that her GP now has PTSD from the whole affair speaks volumes about the failings of the system

I would like to know if there is a list of who is giving evidence on which days. I know Dr Weir is there on Tuesday, but that’s it. I have the link to attend and they have said that you should keep your connection open once you have logged on because they may not let you in later in the day.

An update on the inquest into Maeve death: 2 weeks full hearings begin 10am Mon 22 July 2024. 2-3 witnesses each day. Please contact HM Coroners for attending remotely via live link: coroner@devon.gov.uk case ref 8057264

It is a Zoom conference so you could register and then listen to the sessions that are most interesting. I couldn’t find any info on whether they will be available after the day to watch but I would imagine they should be. I imagine they will be assessing each registration but as “clinical...

Omg me too, I thought maybe I was being too harsh. It sounded like he didn’t really know what he was talking about and just reading what he’d been given - which was probably the case. I imagine he thinks it’s all so far off in the future that everyone will have changed and he won’t have to do...

And in the print version

It is in the “Readly” version of today’s publication , in the Journal section. I think they only publish one version per day so it’s more than likely that it is in the print version today.

It was amazing. I teared up as well at the honesty that was put across. All through the piece I was expecting it to then turn and put the other side of the story as has always happened in the past. I can’t find the words to describe how happily astonished I am that they didn’t do this. It truly...

I was prescribed Modafinil and took it every day for quite a long time (can’t remember exactly but at least a year). It was great and seemed like a miracle. I didn’t have to keep sleeping and the brain fog went away. But then the side effects took hold - heart palpitations, diarrhoea, sweats...

Definitely support your lumbar region. You can get sofas that have recliner sections nowadays which might be a good hybrid.

I would like to know who the multiple ME specialists are , seeing as we always struggle to come up with a list on here

I have the vivoactive 3 and you can add a HRV widget but you have to select it each time you want a reading. it doesn’t have the body battery function but it does have the body stress one. I have been using it for a few years now and it is really good at showing when your body shouldn’t be...

I w as one of the participants in this study and I just want to commend the team for their intentions in this research. just to clarify the subjects were left with equipment to use for a week, apart from a couple of the more expensive pieces which were used while the tester visited my home in...

Bryan Timmins base in Northamptonshire. He is a neuropsychiatrist but when I started seeing him he was of the opinion that ME was a cellular problem but there was no evidence for it yet. He has a lot of experience in people with head injuries (like from a bad car crash) as well and said that...

Quite a few resources on this here https://ldnresearchtrust.org/how-low-dose-naltrexone-works

In the uk it needs to be prescribed and then you have to buy it privately but it works out at less than £30 a month. Or you can get pills online from a pharmacy abroad but I think you still need a consultation with one of their drs. If you get pills then you have to make it into a solution...