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The LDN Research Trust also has a good collection of resources - https://ldnresearchtrust.org/

There are numerous resources on the page but a lot are posted and not documents. I can go through tomorrow on the pc and copy them into documents and send them to you. Or if you want to join the group is called:

It might be difficult to try at different dosages as you can’t just start at a higher dose - you do have to start small and work up. I had side effects every time I increased my dose - terrible nerve pain all over my body at night and horrendous dreams. You are supposed to stay at each new dose...

Thanks for checking. It made me really confused,which isn’t hard

When asking about symptoms suffered in last six months it says “less viral infections than usual” Should it be “more”?

she studied inorganic chemistry and nothing to do with bio sciences. I was at UCL doing chemistry at the same time as her and she was the year above me so I had her as a demonstrator in our lab classes. I was also on department committees with her.

There was a post by the ME Association about low cortisol and it was discussed at a conference last week. https://meassociation.org.uk/2022/08/bloomberg-striking-drop-in-stress-hormone-predicts-long-covid-in-study-cortisol/ Bloomberg article...

I have had numerous rTMS treatments for ME in the UK. The clinic I go to is very conscious of any negative issues and will alter treatment accordingly. they always warn of the possible side effect of induced seizures. But this is minimal and similar to the warnings when you have an operation...

there is a non branded option which works out at about £60. So I think some people think it’s worth a punt at that price. If going for the branded machine at more like 600 then it would be a no

There are then all of the local NHS trust pages that take their information from various sources. I think all the ones I have seen reference psychological factors. these pages then get used in local training for medical personnel. should we have a new thread on “local nhs pages” and we could...

The NHS page about ME still has CBT top of the list of treatments ! https://www.nhs.uk/conditions/chronic-fatigue-syndrome-cfs/ they have a lot to do…

I agree. Having worked in the IT industry I have found though that people working with apps or software are so embedded in the product that they forget to step back and look at it as though you are explaining it to someone who knows nothing about it. I think that’s probably why I am trying to...

I imagine because ME has been listed in a neurological list somewhere. And as a private company the developer will want to promote to as many customers/patients as possible.

I agree that this is something the NHS a should provide but as they haven’t even managed to get the electronic patient record (EPR) up and running then something like this is way off in the future. if we had an EPR that worked across trusts then if you got taken into hospital they would just...

it looks to me to be a portal that enables you to configure a virtual team of professionals that are dealing with your healthcare, and also to allow other family members to have access to this information. If the NHS had a functional electronic health record system then this might not be needed...

Doing a quick internet search, Nottingham University are part of the “Harvard ME/CFS Collaboration”. On their page about skeletal muscle dysfunction they mention looking at proteomics and using samples from Birmingham and Nottingham. so maybe it is linked with this collaboration? ETA link to...

How about “energy bank” this gives the idea that there is only a certain amount of energy available and you could then use the analogy of going over budget incurring an extra cost (paying interest) to get back to base level

Med fit do a much more reasonably priced option which is the tens machine that can be programmed so that you can use it for vagus nerve stimulation https://tensmachineuk.com/tens-and-muscle-stimulation/vagus-nerve-stimulation.html

I am taking LDN after being prescribed by my consultant. It comes from Dicksons pharmacy in Scotland and costs less than £30 a month. If your GP won’t prescribe you can pay for a phone consultation with one of their Drs and they can do it instead. I have found it has really helped with my...

That might be something to do with the fact that they will zap the left side of the brain. Maybe left handed people have a slightly different configuration.