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I had exactly the same experience as you @Forbin from both doses of the Pfizer vaccine. Really bad muscle pain in the injected arm for several days, but slowly improving as the days go by. But I did have an exacerbation of allodynia all over my body with more shooting pains than usual. Even...

I’ve just come across this series of videos on YouTube which looks like a group of NHS doctors who have come together and are offering private support for patients with long covid symptoms. They have called themselves ‘OneWelbeck’. Although some of them are honest that we just don’t know, they...

@Grigor - many thanks for contacting Dr Systrom and sharing his email with us. It kind of make sense now that he views the diseases and maybe the underlying pathology as overlapping but with nuances, whatever that means. He said somewhere that he’s mainly treating ME patients with a...

What I don’t understand is in the table of baseline characteristics they say out of 160 ME/CFS patients, 31% had SFN, 33% had POTS and 22% had fibromyalgia. They then state that between 32-50% of all patients with fibromyalgia have SFN and a similar figure is also found in POTS (they report...

I may be wrong here but an increase or decrease in mi-RNAs following a post exertional challenge may still be the cause of PEM. It probably takes some time for these miRNAs to influence gene expression and then go on to cause symptoms. So testing them for longer than 90 minutes as they did in...

Found it: https://www.nature.com/articles/s41598-020-76438-y The full study title is Profile of circulating microRNAs in myalgic encephalomyelitis and their relation to symptom severity, and disease pathophysiology. Moreau et al, Nature November 2020.

I'm not sure if this has any relevance to these findings but didn't Ian Lipkin mention about a problem with iron metabolism/uptake during his CDC presentation: https://cfsformecfs.org/2020/03/25/a-microbe-hunter-turns-to-me-cfs/amp/?_twitter_impression=true He mentioned in his presentation...

I sweat excessively and have hyperhidrosis that’s got worse as my ME has progressed. It’s triggered by sitting and standing up and cognitive or physical exertion. Definitely linked to my PoTS and general sympathetic excess. Although some days I will hardly sweat at all whereas other days I will...

@Forbin the patchy red rash all over my torso also happened to me twice. Once during my first ME onset aged 11 into mild ME then again preceding the decline of my ME to severe levels aged 28. The paediatricians at the time when I was young said it was roseola. I’ve got no idea how this links to...

For those not on twitter some more comments:

Henrik has really been vocal on twitter lately after the publication of the nanoneedle paper. I thought I’d put his latest tweet here. Lets hope it will come back to bite him in the a** one day. But no doubt he’ll claim ignorance. There are many more tweets all of which are offensive as usual.

Of course Henrik had to have a say... What exact tools is he referring to? Psychobabble ones?

I’ve had first hand experience with the appalling “service” if you can call it that at Cambs and Peterborough. They pushed the whole fear of exercise/deconditioning model on to me. When I responded by saying that the theory has no logical scientific basis they got really angry and defensive...

@Jonathan Edwards while I’m not disputing the fact that prolonged recumbency worsens OI, the idea that pwME should move a little more does not fit with my personal experience. I certainly agree that pwME need to maintain a certain level of activity (whatever that looks like for a very...

@Jonathan Edwards - you may find Frans Visser’s and Linda van campen’s work on cardiac output and stroke volume changes during head up tilts in ME/CFS of interest. Although I assume you’ve already seen this...

This research follows on from Prof Lombardi’s and Prof Kenny De Meirleir’s (KDM) prior collaborative work on the appearance of pDCs in gut biopsies of ME patients and potential resulting inflammation. https://www.ncbi.nlm.nih.gov/m/pubmed/23422476/?i=7&from=De%20Meirleir,%20Kenny And their...

@Helen - it looks like they’re doing a single dose of 60mg in the trial vs placebo and testing it’s response after the cpet. Maybe during recovery cycling, it’s a bit unclear. I wonder whether they are using a single dose big enough to show an effect in their trial design. I assume it doesn’t...

David Systrom’s trial now on clinical trials.gov. Reiterating what he explained on the ME alert video. Interesting stuff. https://www.clinicaltrials.gov/ct2/show/NCT03674541

Latest from Henrik Vogt. Is this his response to the recent OMF symposium hypotheses? I agree with him that his ignorance and arrogance do go hand in hand!

@JohnTheJack - just to reassure you that the Yorkshire Fatigue Clinic are pretty unique in the UK in the fact that they don’t ever push GET. In fact they largely disagree with it and how it has been delivered by mainstream NHS clinics. I think this is why they set up an independent private...