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No Jonathan I don’t believe ai have misunderstood your purpose. I think I share the goal, don’t doubt your intentions and am grateful for what you are trying to do. I have been very clear reading what you have said in this thread and in the past. I’ve also I think been clear in my position and...

It’s incredibly disappointing to see. In this respect the MEA are acting as the useful fool rather than standing up for and representing the interests of patients. We’ve seen it with patient organisations and charities before, it reminds me of the path of the Sussex & Kent ME/CFS Society and...

Some of the questions going through my head. Sharing to aid discussion. Maybe get some answers, maybe more questions! Would this problem hit specific cell types or all cell types? If so why? Could it be present in all but showing up more in some or only affecting certain cell types? What could...

Can you tell us more about what this image is showing and what it means @mariovitali Is it it showing studies which have replicated genes/processes you have previously identified? Is this just the most recent studies? I look forward to hearing more about any discussion with Michal Tal too.

And I know the data is quite dense. So Here’s a hopefully fairly readable and overview of the clusters at k=5. There’s obviously been curation by me here but at this level the story seems to be about broad biological areas and systems which may be involved. Cluster 1 – Neuronal/synaptic...

With the above caveats, and while I don’t really have the biological grounding to interpret this well, a couple of things which popped up while reading all this. And may start some discussion We have the now familiar neuronal/synapse and immune signals being highlighted. And possibly some more...

I thought I’d share a few more of my thoughts and notes on the analysis I did. To start with… on interpretation This approach doesn’t tell us anything about what is cause and effect or which of these mechanisms are upstream or downstream of others. There’s a bias towards well known and studied...

Okay, I don’t doubt what you experienced. I do doubt the value of taking it at face value and extrapolating from that experience to the wider context and motivations of doctors in the present day and using it as an argument for action here. Let me put it this way, how likely are people...

And they are quite likely lying to you and themselves. Please read my posts, but I’ll repeat this: Doctors aren’t changing their mind and denying care because of patients spouting woo, it just gives them cover for something they believed anyway. That these patients should be ignored. A lot of...

Thanks @forestglip I need to get my head around using locuszoom sometime. I suppose this just tells is that there isn’t a genetic difference in the gene in people with ME/CFS, not that it is or isn’t involved?

Doctors have said doctors have neglected patients because of what patients said. And they’ve written that down. Why do the doctors get the benefit of the doubt here? Could they be, even if inadvertently, misguiding themselves and others? Once again, I agree we should combat the woo. I agree...

I don’t disagree with us needing to stop the woo and stop advocates from pushing it. It is unhelpful. Let’s work together to address that. Painting a picture of patients being the reason we are all suffering and denied care is I think unhelpful in many ways including in the goal of combating...

I don’t want to speak for anyone else but I understand the reaction and share it. Some of the earlier posts read to me like victim blaming. Some here have said doctors are not treating patients because of patients attitudes.

My problem with this is I went out of my way (and still do) to not be ‘one of those’ patients. I have spent a decade giving medics every opportunity to give me the basics. And yet… I can see the argument that people who are better than me but shout a lot of woo make it worse for all of us. I...

If anyone wants to learn a bit more about lipids and cell structure/membranes, this is a good overview from Khan Academy and their AP Biology course with two videos, a text overview and a short review.

If this is present in multiple cell types it seems like this could be a really interesting alternative to the channelopathy or GPCR antibody ideas, but which covers a lot of the same systems and symptoms we see from some other studies. I’m particularly interested with signalling and different...

Looks great, where did you get it @Kitty ? Mine arrive and have worked well on a try on one hand, much easier to cut and file smoothly well. Thanks all for the advice. BEZOX Sturdy Comfortable Nail Clipper Set Bona Fide Beauty Czech Glass Nail File

Good point. It may well be. Whatever @DMissa is happiest with.

Even if they know, the motivations to pump up your paper seem significant. The incentive structures for sticking to the facts in a measured way seem far less albeit more worthy

Looks really interesting and lots to digest and think about. And thanks for the summaries and discussion from those more knowledgeable on this stuff! @DMissa I’d like to create and share an audio version of the paper if this is okay with you? If you have the plain text of the paper available...