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Are you able to click on it and then turn your phone landscape mode? And zoom in as you read? It allows me to read. But I am struggling with it too - it’s not easy to read. I can’t get the text to copy here.

I didn’t say CCI in ME for decades. I said CCI. Infact I even wrote in my post “I’m not even talking about ME but about CCI in general.”. Dr Bolognese has been operating on patients for decades, and giving diagnoses to patients that other neurosurgeons don’t.

Dr Gilete now saying that he is a pioneer in treating ME when they fulfil criteria for CCI https://drgilete.com/neurosurgeon-spine-surgeon/ “he has been introduced to a group of patients in Europe who suffer from what is known as connective tissue disorders, such as Ehler-Danlos Syndrome...

This is what I was thinking. It’s fine for there to be a theory but why haven’t the surgeons published the evidence? No, seriously, why, when it’s been decades for some of them? This is what, more than anything, makes me feel the most sceptical. Why do we still not have one blinded study with a...

This is so weird. I would agree with maybe keeping a food diary, maybe even sleep diary, anything even slightly different you’re doing throughout the day. Are you doing more on the days you feel better for example.

This is interesting - what do you mean?

Yes - and people with this type of CCI say that it’s the tipping the head back which is causing them problems. Jen B says her condition got worse following intubation. Jeff says it got worse following dentistry. I notice @Jonathan Edwards you only ever mention the head tipping forwards. But it’s...

Wait why is Esther Crawley interested in doing imaging of brains of PwME? That’s not what she usually does?

If people are happy to work with and edit and produce a document with someone who provides treatments includes injecting unproven things into people’s bodies and says they take a “systematic approach to assess symptoms of autism“, then I think this is part of the problem, and I would also...

Just feel despairing and hopeless at what’s happening around the world with coronavirus. China showed us what to do. Yes they did lots of things wrong but a strict lockdown and strict border control and contact tracing is all it takes! Other Asian countries also showed us what to do - by having...

I’ve seen that document before but only just had a look at the names. I’m not sure I am completely happy to trust that document because of who it is written by. This name popped out at me: Dr Ilene Ruhoy, who runs or is heavily involved with the Centre for healing neurology, which among other...

Not sure why media link not working but it says today is the start of DecodeME funding as it’s 1 September!

You could ask your doctor about a different way of taking it - some GPs offer vit D injections. In my and my mums case , chronic vitamin D deficiency, we stopped getting tablets but buy the 3000 IU spray from Better you which keeps my levels up. You could ask them about different options :)

Can you point me towards the publication where all the measurements the surgeons who diagnose these conditions use (including CXA), have been shown in a blinded/non biased study to be different in CCI, compared to healthy controls. Just because something is published (eg the Bragee study which...

I get pain that feels like it’s in my bones, was told it’s fibromyalgia. Legs are one of the worse places, the deep pain. Found no help for it so far with pain meds except lidocaine does help a little (but that’s more for the muscular pain, but it just seems to reduce pain in general). I find it...

On Jeff’s website, I think this is new, about surgery outcomes: “We don't yet know exactly how many people with ME may have CCI or other structural issues as the mechanism underlying their illness. At this point, we do know that in the time since I first shared my story publicly, back in 2018...

You would think so. Personally I would like to see these surgeons given 500 MRIs of healthy people and 500 MRIs of those with CCI or even ME type symptoms. And see them calculate measurements (CXA, the other measures they use) for both groups. In one study. Without bias. Without knowing who is...

I think the counter argument to this is, which I’ve seen pointed out on various social media when talking about CCI, is people who have severe symptoms - they say they don’t have time to wait, and want to go ahead with surgery, either on their surgeons recommendations or just through their own...

I was going to say this. I score 0 on that score for bad days, 1 (feed myself) on good days. and yet I can get a lot worse than that and there’s no way to record that. And even when I get better, I’m still really only ever at 1.

Thanks. I found an analysis of the Raine Study, around 60% of the girls aged 14 scored positive on the Beighton Score with a cutoff of 4, and 36% with a cutoff of 6. So yes, those scoring positive on a Beighton and thus meeting the threshold for hypermobility (and/or EDS - don’t know enough...