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I chose only 1 from treatment and management, 7 from underlying mechanisms, and 1 from health services (about hospital, due to my personal experiences) and 1 from causes of symptoms/treatment (sensory). My recent hospital experience really brought home to me, that part of the reason why people...

if you are talking about the autism health passport - you can fill that in by yourself at home (I did!). https://www.autism.org.uk/advice-and-guidance/topics/physical-health/my-health-passport

I tried to do some reading to understand it, maybe this helps others too? Common genetic variants are those that are found more commonly in the general population, but which don’t usually (by themselves) cause disease. from...

I just started listening to the webinar. I’m at the point where the discussion is about how to make sure only people with ME take part (ie not misdiagnosed people). Chris Ponting mentioned exclusion criteria. Could someone involved, expand on exactly what the criteria is to take part & what the...

I went all the way to the end of this questionnaire and clicked submit. Basically for all the questions I clicked “very worried” about, like shortness of breath and chest pain, it told me to contact 111 urgently. Then all the things I said I was “moderately worried” about, eg tiredness it had a...

Mine is every 3 years too, but they contact me every 2 years. It’s very stressful. Same for ESA I think, although I need to check. At the first assessment they said it’d be every 3 years because people with ME can improve, so I could improve too. Then they just kept it as 3 years again in the...

[in response to @Jonathan Edwards “ Jonathan Edwards said: ↑ The same. She resigned, but after signing up to the revised guidelines. Why she resigned nobody seems to know.”] @adambeyoncelowe could you share with us some more details on this now that you’re out of NDA?

In the minutes it says: “Paul Chrisp also thanked everyone for their time and added his key points: • There is more agreement than disagreement. • Work to amplify areas of agreement and aid understanding through greater clarity or additional narrative. • Consider a joint statement from the...

Association of British neurologists (my bolding): “We are concerned by the recommendation to risk assess each interaction with a person with severe or very severe ME/CFS in advance to ensure its benefits will outweigh the risks to the person. We are not aware of any clinical evidence to support...

Hi @Perrier i read some of your messages in this thread and just wanted to share what helped / is helping me. I think pacing when severe or very severe is very different to pacing when mild/moderate. I found a lot of the resources and/or stories, while they gave me inspiration or helped with...

I need to mention these here before I forget! The comfiest and softest trousers! I live in pyjamas but really miss wearing nice clothes. I have a lot of dresses in my wardrobe, but find leggings difficult (they have to be tight when you wear them, to keep them up), and tights (too tight and...

@JemPD thanks for letting me know. I still haven’t found a ready made drink that I am able to tolerate AND not feel sick at the taste of. Some end up having a lot of nuts or seed in instead which I can’t tolerate either. I find the ensure drinks to be be good at keeping weight on but very...

Some links that may be useful https://www.aans.org/Patients/Neurosurgical-Conditions-and-Treatments/Spasticity https://www.nhs.uk/conditions/dystonia/ https://www.healthline.com/health/spasticity#medication I typed in “muscle seizing”. There are quite a lot of tests and treatments that can /...

Sorry I wanted to tag @Snow Leopard in the above to get your thoughts as well.

I would like to know if this claim, is true. Public health england has done a study and they are saying two doses of the vaccine provides over 80% protection against the Indian variant of the virus. Does this mean I am 80% likely not to get COVID if exposed to the Indian variant...

I’ve recently started being able to eat oats again (was suddenly intolerant one day, a few years ago, now I tried again and I’m suddenly not). I’m beyond happy! I adore oats. Nothing more comforting to me than a hot bowl of ready brek with maple syrup. :) :) filling, easy to eat, don’t make me...

Sorry if this is slightly off topic but I don’t think talking / a telephone number is an easy option for a survey, if you’re severely affected? One of the hardest things for me to do is listen to people speaking, and talk back. I think that’s a similar finding in a lot of severely affected...

In the NICE guidelines, it is only prescribed in psychosis or mania in the U.K. https://bnf.nice.org.uk/drug/aripiprazole.html Even as an adjunct to depression meds - which isn’t listed in the guidelines - probably only if the other meds didn’t work, or perhaps if you saw a psychiatrist who...

On Facebook, on the same public post, Dr Charles Shepherd has been answering comments. People have commented asking why he didn’t mention the Stanford trial, the fact the doses are much lower etc, he had some good answers for that: he commented this to most of the people who asked about the...

ME association facebook post: ARIPIPRAZOLE There has been some discussion about this medication and ME/CFS on social media. Dr CS comments Aripiprazole (trade name = Abilify) is a powerful prescription-only drug that can be used to treat schizophrenia, bipolar disorder and major...