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You are, in this paragraph, repeating what I see as a the problem. You do not blame patients directly but you do state that the reason to take action is because patients have been excluded from physician care and that has been contributed to by the actions of patients. My counter is this is an...

Here’s the researcher access page for DecodeME, it seems like the best possible, ready made, validated data set. https://institute-genetics-cancer.ed.ac.uk/decodeme-the-worlds-largest-mecfs-study/researcher-access Some data (like the summary information from the GWAS) is also freely available...

Have you got a complete list of the genes you are most interested in @mariovitali ? Apologies if you’ve already posted, thought it easier to ask the expert than search! And to play devil’s advocate, this is a view of successes, do we have a view of failures or at least of not yet confirmed...

Yes, I think it’s just that this is all this paper shows us. It’s researchers being understandably cautious about wider speculation. Or at least drawing a distinction between speculation and evidence.

Is this an entirely unique pathway for B cells, so is your expectation that this would only be seen in antigen+cytokine triggered b-cells? Or are the same pathways/mechanisms present elsewhere in different cell groups, perhaps used a bit differently as often seems to be the way! Wikipedia also...

Aha! Thanks for the clear explanation @jnmaciuch , very much appreciated.

Can you elaborate? I don’t understand what this means (or how it would happen or manifest) so my head was very much in the ‘okay, lipids, mitochondria, phospholipid bilayer’ space.

From the DecodeME candidate genes for PRDX6 (genecards link) This would support the idea of ‘stiff’ membranes from lipid build up wouldn’t it? Here’s the papers referenced https://www.sciencedirect.com/science/article/abs/pii/S0891584905000821...

Agreed. To me the question is how we approach that and the justification and arguments we use to do so. Maybe we can focus on the message of ‘this makes communicating the good new scientific discoveries (which yiu as a charity are supporting) harder’? Some of the other more grassroots patient...

The anecdotes and justification used for the action needed which keeps on accepting a false premise posited by medial professionals for their own failings and putting blame on patients. I’m sure it’s unintentional but that is how it can be perceived and it keeps on being repeated. I don’t...

On the POTS thing I officially have a POTS diagnosis, from one of the questionable ‘specialist cfs/me’ services and doctors, although on paper supported by a cardiology department. But I don’t think I have POTS, I don’t tend to say I do. But do have OI and something weird cardiovascular… Maybe...

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...