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I understand that the issue of herpes virus is they are all latent viruses and the antivirals can only act during reactivation since the action of the drug is blocking the synthesis of DNA. Additionally the tests are on blood not the tissues in which the HHV reside.

I’m hoping that this hasn’t already been done ( maybe by OMF? ) I wonder if using longitudinal/ regular finger prick sampling (through the day and over a few days ) to look at how personal biochemistry changes. My understanding is that this type of sampling would quench any activity. So use...

I discovered 20 + years ago that by lying completely flat/ head level with heart for 10 minutes that this would enable me to be vertical , sat down for next 4-6 hrs. However I was always cautious about being flat for too long……I didn’t want to cause more damage than benefit by under use . I...

I think the reason I was so knocked sideways by John Radcliffe, Immunology dept. turning me down was that I was just so happy that they had offered me an appointment. It felt like all the work done by all those people to change the NICE guidelines in 2021, was finally trickling through to help...

I’m off to see a Neurologist ( privately) who sees MS and Long COVID patients. Since he looks about 40 I am hoping he’s open minded and interested. This was really instigated because the Immunolgy dept at John Radcliffe, Oxford offered me an appointment one day in June this year, then the next...

I often feel that I have been stumbling around the ME Maze for a long time, made much more difficult as if I have one leg strapped up so having to hop, blindfolded and with one arm tied behind my back.:banghead: (Obvs only an analogy) Maybe this isn’t in right place? Or even a useful...

Does anyone know of any progress emerging from this approach?

Merged I noticed this piece in Nature last week which to me is yet another layer of problems, however I dithered about posting since I wondered if it was useful/helpful. Then I realised other views I always find helpful, so here goes…..https://www.nature.com/articles/d41586-023-02299-w

I wonder if simply looking for results in blood has been done for so long now (over 30 yearsI believe ) plus with new technology surely there must be another way? How about tagging with a specific probe say for part of the genes involved in lyric cycle of maybe HHV6, EBV, or other neurotrophic...

My understanding is that the CureME team at LSHTM are doing a longitudinal study on viral loads of EBV and HHV6 in saliva.

I have tried uploading file but error of file too big. I’ll try smaller/lower resolution photo?‍♀️

I get access via Libby app and my MK library card. I have photos of both editors front piece and page 14 article. How can I attach here if of interest?

As far as I know the DEcode ME study is the first , biggest and imo the current best chance of getting some useful information. My understanding tells me that although the DNA information can be seen as the foundations to personal immune responss to disease, allergens, stress, biochemical...

I’m curious how many professional sports people who get glandular fever/ mononucleosis return to full recovery ie back to professional level performance and for how long? Presumably sports scientists might know this? Has there ever been anyone researching the effect of EBV on sports...

This all sounds so familiar to me after starting my ME with GF back in 1999 and again 2000. Back then the diagnosis was made by Paul Bunnell test which isn’t specifically EBV just a heterofile antibody that clumps horse red cells. (I know this cos I used to work in the NHS haematology lab...

I wonder if NHS records of NHS lab results showing EBV/ glandular fever could be used to do a longitudinal study of those patient records to see what the long term health outcomes have been. Has there ever been such a study? I’m thinking similar to US army longitudinal study of EBV/MS with 10...

That would be so great to have a look at this. Thank you for chasing. I keep getting tempted to sign back up with Facebook etc but usually I’m much better without it.

I’m not on Twitter or Facebook. Any chance of outline of this discussion? I’m just hoping SW might have learnt something more than that old 2017 narrative about pwME?

That's just so spot on. Brilliant. I'm embarrassed to admit that I've believed most of the BPS GET/CBT junk for years:banghead: Spent hundreds £s on various pscho therapies, heart rate monitors, supplements, anti-virals, etc,etc.... None have given me a noticeable improvement. The only thing...

Now that the guidelines have been changed……. which is so awesome :thumbup::balloons::trophy@:party: and I am so grateful for all those people who have done all those wonderfully amazingly effective things. I really am no good at expressing how grateful I am . Therefore asking my next...