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We lack entirely the infrastructure to research transient phenomena associated with the disease. There is a reason CPETs are being used to induce crashes because zero infra exists to monitor patients and investigate events such as remissions or infections or anything else. Patients talk about...

Every infection I have just felt worse, for the years up to the pandemic, with Covid itself also causing a monumentally bad crash to considerably worse still. I don't feel better on infections at all.

Another "the pandemic is over" victim from 2022, so an Omicron infection. Very mild but a career ending post viral syndrome that is still persisting.

I could see his hands shaking at the end there, I think he may of overdone it quite a bit unfortunately. It is amazing to hear his voice after all these years and to see a bit of emotion in his eyes.

We convinced people that symptoms weren't abnormal successfully and have redefined recovery to complete failure of treatment but at least the people feel better about it!

I used a second hand Herman Miller Aeron chair from the late 1990s for about 15 years which will likely be about £300-500 still. They are relatively easy to repair/get parts for so these early popular chairs are still constantly getting repaired. Brand new the V2 of the Aeron (which is better in...

I swear he said he was setting up to a trial of dextro. I don't see the point of running another LDN trial from Dr Younger, we already have some on the go. The proposition of the dextro version however seemed more compelling and different to what others were doing.

This is a strawman on patient expectations. The patients know there isn't a cure, they are seeking diagnosis and symptom relief. They want their condition accurately reflected in their medical records, having the guidance applied with good intent and for their doctors to represent properly how...

I am not sure where this hope is coming from, Long Covid patients are treated just as badly. Their diagnosis rate is attrocious currently, far worse than ME/CFS. Now all the funding has dried up in the USA the flurry of research and trials is going to be winding down. The definition of the...

Given the history however I don't believe the existing doctors or institutions can offer us normal treatment. The mistreatment is deeply entrenched that now the guidance has changed they simply refuse to read it, distort everything in it and carry on mistreating patients. That system will never...

Which is precisely what MEA and government is doing, turning to BACME and deploying specialist nurses. Which will lead to more decades of harmful exercise and CBT abuse of patients all under the new theory of the disease being autonomic dysfunction and rehab to fix it. Its a complete disaster...

We can't win right now because no one is willing to accept the whole problem completely as it actually is, everyone is trying to downplay and distort how bad the situation is. If you make the existing services and departments treat us they will do what they always have and distort the disease...

The core of the problem is the overwhelming majority of the populace of the planet gaslights ME/CFS patients due to having the wrong information or worse they are doing it intentionally. This all stems from medicine, it has created the stigma. Its very hard to believe in yourself and a few...

We have seen one for SGB and it didn't find any benefit (https://clinicaltrials.gov/study/NCT06253806?tab=results)

A lot of LC and ME patients defended visible on this especially after their statement. Neutrality is a pretty hostile position to be taking in this area of research especially neutrality that ignores all the history and especially the people who caused those historic harms.

And by differently we mean precisely the same but we are considering a rebrand so it sounds different.

I have had so many issues getting into eventbrite sessions, their systems don't seem to work.

Even in the miasma theory period they did things about the bad smells like wearing plague masks and replacing the bad smelling water. We are in the age of "well actually infections are good for you" while people die phase, its truly a complete rejection of science. ME patients have been dealing...

I don't see how any of the changes they are making will address my concerns about how the organisation is being run, its goals and targets and the poor decision and judgement of the controlling board that has constantly led it astray. Its not (just?) an execution issue, which this change would...

I do wonder how long its going to take for the Inquest (and science generally) of airborne spread to finally get into the NHS. They seem impervous to the evidence at the moment and are still issuing surgical masks, which everyone knows is not PPE and does not meet the health and safety standard...