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Wasn't when I suffered from it, was diagnosed off symptoms entirely.

The AI has a lot more knowledge of these types of diseases too because it's trained extensively on medical papers, it's up to date in a way no doctor is.

So this is an admission the are failing 1 in every 6 patients with this ideology and once again it's the patients that are difficult not the healthcare system that is failing them?!

Someone ought to do that systemic review "We looked at 10574papers and determined none of them met sufficient standard to be included in a systemic review due to widespread poor standards and low quality". That is the reality of the psychology industry as it stands and its ability to replicate...

And should add the big problem with this strategy is we have plenty of people with MPs who will ask the question who are far too sick to be doing it. So we end up with relatively less disabled people unable to represent because of their MP and severe people having to coordinate messaging to MPs...

It does not surprise me to find the MEA fingerprints on this with no criticism of the nurse led, rehab and recovery and back to work strategy with "treatments". On brand as always failing to criticise that which is quite concerning in this tender.

I have tried, I have fed them a variety of said questions to ask but they just aren't interested and due to the way our dumb representative system works we can't just send it to Tessa Munt or someone else on the APPG to do the representing. So alas what we have to do is share the questions...

How is the NHS going to source consultants in ME/CFS when there is no speciality nor training within med schools? How will severe patients pathways work? What departments and facilities can provide for their unique needs within the existing stock and what investment is required to ensure every...

There doesn't seem to be any accountability that the answers are basically waffle repetition of the same position and they have done nothing to actually fix the problems that ME/CFS patients face. Its simply not enough to just pass the buck back to the NHS, it will do what it always does and do...

Not sure who it is that can even fill the roles really, there is no one with any expertise to be taking these jobs anyway. What remains in the NHS is all the CBT leading exercise lot and the rest went private and retired and they aren't going to be enticed back for "rehab" rewording. So all that...

So brain plasticity, the fundamental underpinning of the entirety of CBT where we can rewrite our brain to make different choices to change physiology isn't even true in any domain they have claimed it to be now that we actually looked. Its wild to me that these claims have been constantly made...

This is about definitions for the WHO I suspect. Long Covid is the symptoms that appear or remain after 3 months after infection with Covid that are not explained by another condition. Which ultimately excludes cardiovascular disease and organ damage which are already named conditions. But what...

I have always had this with ME/CFS, a blocked nose that is worse in the morning and requires constant attention to keep it possible to breath through the nose. The easiest solution I have found is XLear, a squirt of that on a morning seems to have me mostly good until the next day.

2024/2025 Review split into 4 articles. I have taken some block quotes from each on the primary points but there is a lot more in this besides the quoted text. Introduction https://www.meresearch.org.uk/2024-25-our-charity-year-in-review-introduction/ Investing...

There isn't a single year of the pandemic where you can trust the Covid infection data, whether they had Covid or not was their best guess in their head and you can't ask the dead. 2020 there were no tests available, 2021 is probably the best year since routine testing in volume was occurring...

We really aren't ready for a drug to work. The bulk of patients can't get a diagnosis because there aren't services to do it and GPs wont read and follow the guidance and there is currently no one to send patients too who would do this, the existing clinics don't have the right people to deliver...

With a drop out rate of nearly half of its participants and those that stayed showing really minimal impact it could very well be harmful. High drop out rates are always concerning and often correlated with reported worsening in condition.

I view these stories as complete and total state failure that puts up arbitrary rules that ill people can never meet and who aren't ill enough to be looked after and end up homeless and die young. It is great he found a place to be but it is another story about the state failing to provide for...

Ultimately the rhetoric has endangered disabled peoples lives, attacks are well up. Not just blue badge but its impacted on motability and they are coming for PIP and other benefits as well and that seems to be the goal to drastically cut spend on the disabled especially if it keeps climbing due...

My lactate hovers between 9 and 12 mmol/l so its extremely elevated. I don't notice much of a difference between those levels however its not correlated particularly with how I feel. Edit - I am taking this with a meter straight from my blood drops so there is no delays or issues with...