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Has anyone been offerred this? - "QUVIVIQ (daridorexant) – Europe’s first dual orexin receptor antagonist – is now available for patients with chronic insomnia disorder in Italy and Germany" https://www.nice.org.uk/guidance/ta922/chapter/3-Committee-discussion...

Would be good to try these tests in people with mild and moderate ME.

She was given this until she got the fit-note from the GP. We heard no more from the work coach once this was noted on her online journal. As the fit note was for 3 months and she got assessed as LCWRA before this expired we haven't needed to see the Gp again. (Unfortunately, this GP has now...

Hi @JemPD, sorry to be confusing. As this was my daughter's first application for benefits, she needed a "fit note" from the GP, to avoid having to do work related activity until the assessor decided she was not fit for work or work related activity. Fortunately her work coach had some...

We finally applied for UC in mid Feb. We spent the first 3 months of the year researching and filling in the WCA application. This totally wiped my daughter out. We had been due to see her GP in early Feb, but when we turned up it was adifferent one. So we didn't ask re fit note, but about...

I'm sure more CBT/ACT/another therapy they can make money from will help all those LTCs! Thanks for using your time and energy to enable the rest of us to see the questions.

That's a great, well informed and referenced response from CAB

I think that this could be the cause of some of the hypersensitivities to stimuli that people with severe ME experience, such as not being able to bear even light touch. The nerves that enter the dorsal root ganglia are sending information from the periphery to the brain and this messag could...

Head and brick wall again.

This is helpful, showing that reduced visual processing speed (VPS) is reduced in people with LC. Would be very interesting to see this compared with PwME. @Joan Crawford

I won't be surprised when this paper is referenced in support of anything produced by Kings on persistent physical symptoms.

Thanks so much for all these posts and links @Simbindi. I hope this hasn't pushed you too much. It is really helpful for those of us who have not followed these developments as closely.

@Simbindi, you have done a fair amount on this, do you have any ideas or bullet points?

@IanMcPhee, there's a great sewing shop in Uckfield. The guy also sells reasonably priced and refurbished machines.

For those who don't know about DHODH inhibitors "About Vidofludimus Calcium (IMU-838) Vidofludimus calcium is a small molecule investigational drug in development as an oral next-generation treatment option for patients with multiple sclerosis and other chronic inflammatory and autoimmune...

Interesting use of the word host, makes me think of parasitic involvement!

So sorry about this @BazzaBoyle Reports from the paediatric service there are just as bad. I've haven't heard any evidence that the rate of apoptosis (programmed cell death) is affected by worrying, or altered in ME. Your body needs to kill off old or damaged cells and produce new ones all the...

EC has renamed her clinic Paediatric Specialist Fatigue Service So, she can now ignore the NICE GDL for ME/CFS. From the experience of other families, she has been the driver of BPS for paediatric ME and training on FII and safeguarding.

This sounds very interesting. It's presumably the Dr Cambridge that Jo Edwards has worked with from UCL.

My daughter has recently had a letter from the clinic saying that her appt has been moved to April 2024, from this Nov. The letter said is would be with Dr M Lobo or a member of his team, so maybe he has retired and returned part-time. I think this gets round the pension issues of continuing...