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If BC007 helps some people and not others then they need to go back to pretrial and work out what they think that is. Like the group that found the Natural Killer cell levels impacting on the performance of the drug. I don't doubt some of the mistakes they made are clangers but they aren't why...

FACIT is 0 to 52, bell is 0 to 100, these effect sizes are tiny and well within the normal variance of the disease and I suspect quite likely below the usual threshold for a detectable change from the questionaries themselves. I saw the same thing being done on some studies with Chalder fatigue...

We only got to the stage where people with no idea about the disease in government are writing a plan for the clinicians is because the NHS could not do this itself. After decades of failure and patient harm we are in one of the oddest positions where medicine is dead set on not accepting...

Given the first two were pretty bad and received a lot of comments that were never addressed I can't help but think they have just decided to hide the controversial bits. Its unacceptable that its not reviewed and needs to be challenged robustly.

I would have been great if the plan was actually committing to doing this much, but I see nothing in there that suggests they understand these things are what is necessary. The fact it contains no fixes to the research problem and funding is really what damns the plan and the patients with it.

The one thing that is abundently clear from this document is that the government and NHS will never become what ME/CFS patients need. We are going to have to rally around the idea of a private healthcare system that contains our experts based on the science patients fund and that is all we can...

Says it all about how much attention they have paid to the disease in making this plan that they can't even get the description for the severe remotely right.

After what we saw as the draft over a year ago and the comments being made I am expecting to be very angry today. I didn't expect much, we are going to loose our lives rotting to this disease while everyone does nothing to help us as millions before us have also done so. This is not the...

A long term funcap tracking of patients for recovery and also death. We really need to have some good data on prognosis. My idea has been to have an annual funcap survey plus some basics like whether the patient has died alongside which criteria they match (CCC,IOM,International,NICE etc). Its a...

"specificity of 87% and a sensitivity of 77%" Not as good as I had hoped it would be. Looking at the data plots the correlation with severity is also not clear cut, this is not as clean and clear as the nanoneedle result.

Seemed to help my back pain, it reduced the pain in my body. But it didn't make a difference to anything important about the severity of the disease.

I wouldn't go anywhere near this one. Usually psychology questionnaire approach to try and undermine ME patients. The slower they gain participants and the less they have the better for us all. The South East seems to be a hotbed for this sort of bad studies and mistreatment of ME patients...

Its going to get rolled into the 10 year plan and effectively cancelled, seems inevitable at this point. They have no clue what to do and they refuse to provide any funding anyway.

The challenge is first to identify a condition that you don't know how to test you first have to group people by symptoms and apparently how they started to suffer the condition and then come up with a working clinical identification to conduct research on a patient group. The problem is usually...

They have the definitions of PEM wrong completely, its defined as tiredness/fatigue/pain immediately after exercise. I don't know how they managed to butcher the ICC criteria so badly but they have completely misunderstood. Fatigue being defined as tiredness that doesn't resolve from rest, which...

Didn't drink alcohol, don't particular care for chillis, usually didn't and still don't eat breakfast and I love cheese but not so much pork. So I did just about everything "right" according to this and still ended up with ME/CFS and the consumption of cheese and pork not and avoiding those...

The SMC has had deep access to the BBC since the 1980s, its tendrils are influencing everything across the entire organisation. Its set the default understanding for the disease and thus their viewpoint forms the basis of everything the BBC does, their "experts" on the condition will be SMC...

Covid is everywhere all the time, the waves are bad because they send a lot more people to hospital and the Long Covid production rate shoots up for a month or two but the mitigations we have to take to avoid getting worse from Covid infections are something we have to do all year around. I...

Ignoring the fact that for some people its painful to lean over but they have been forced to lean forward or have to get up. Arms can also be an issue if you have back pain and have to sit awkward and its a trade off between being able to use arms to assist to get out of the chair verses whether...

Its no accident, the government intentionally railroaded Long Covid. They threw research money into the same pit of psychology and exercise as usual, they did everything they could to ensure that those seeing the real impact got no where. They have done absolutely nothing about Long Covid for...