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Completely agree - the key questions all relate to identifying the underlying mechanism, everything else follows from that. Thanks for sharing your selected Qs, I have followed this list quite closely.

Thanks very much for this reply - useful to know.

Posts moved from this thread: Trial of Long Covid treatment - AXA1125 from Axcella Therapeutics, 2021 ________________ Use of whole genome sequencing to determine genetic basis of suspected mitochondrial disorders: cohort study Abstract Objective To determine whether whole genome sequencing...

Thanks - this is very interesting. If there are forum members with medical knowledge/experience (I personally have none) who are also interested in this angle, it would be great to hear their thoughts on what the most useful next steps might be to explore this further.

Thanks very much.

Does anyone know of a good place to shop for this kind of compression gear? Thanks.

It really is excellent. I've emailed the author today to say so - power to his elbow. I'm not aware of any comparable long-form journalism in the UK press on this or related topics. This kind of deep, rigorous investigative journalism which goes beyond sound bites just seems to be absent when...

Thank you. However I don't want to create more work - I can always just print out the text if a more 'formal looking' version under letter template doesn't exist.

This is an excellent letter - very clear and focused - thank you for the hard work that went into it. Is there a signed PDF or scanned copy of the original letter available? I have secured an in-person meeting with my MP next week and if a copy of the letter is available, I will print it out...

Apologies for the further message but I wanted to suggest that those with the energy and inclination could - in addition to emailing their MP - also ask family members and close friends who live in different constituencies to send a similar version of the email to their MPs. This way one...

Just to encourage others who may be considering sending their own version of the ME Association template letter to their MP (or asking family and friends to do so), I have received written confirmation today from my MP that he has made representations to NICE on my behalf. I also intend to meet...

Incredibly useful - thank you!

This article features on the front page/top slot of the Financial Times website today: https://www.ft.com/content/ff63cd68-7281-4340-b1b6-5db3d891eaff "Long Covid defies understanding as sufferers despair: Doctors fear ‘tens of thousands’ of people could be afflicted by multiple symptoms"...

This is again very helpful, thank you. Good to know of these RCTs - they'll join my Excel tracker. Your final point also chimes with my experience; it's a sad reflection on where we are with ME/CFS and how far the medical world has to go, but no less true for that.

Thanks for sharing your experience - some helpful pointers here. The more I look into this avenue, the larger the "so what?" question looms. If, for example, extensive tests by a peripheral neuropathy team were to show possible evidence of small fiber neuropathy, would this deepen understanding...

It's eye opening to know that face and sinus pain/swelling in response to light stimulus could be driven by something other that allodynia. I'd stuck with that term as a GP used it years ago, but I now see that it may be misleading for the various reasons you suggest. Anyway, I take note of your...

Thanks for this perspective. Perhaps trigeminal neuralgia should join the short-list of things to check for/rule out. The sheer strangeness of the symptom (I don't read of many mild to moderate ME/CFS patients who suffer it to the same degree) makes me feel there's a chance something like TN...

Thank you.

Thanks for the swift reply. From your assessment, it seems clear that there's little value in going down this avenue from a general ME/CFS diagnosis or treatment pathway point of view. But I wonder if there might still be some value in the context of a less ambitious goal: figuring out why...

Hi everyone, I’m keen to know if any forum members have knowledge – or personal experience – of the role of peripheral nervous system tests in ME/CFS diagnosis and in symptom-specific treatments (examples: electromyography and nerve conduction studies; skin biopsy to evaluate epidermal nerve...