ME/CFS research

1) 🇩🇪 This study looked at medical diagnoses in an insurance database that preceded an ME/CFS diagnosis in children and young adults.

For example: bronchitis and sinusitis were positively associated with ME/CFS rates while vaccination or ADHD has a negative association.

The authors have now decided to withdraw the publication:
vu.nl/nl/nieuws/20...

And wouldn't factors such as activity levels affect mitochondria gene expression?

1) This study scanned existing ME/CFS datasets on gene expression and proteomics to look for common genes or patterns. The mitochondrial genes MT-RNR1 and MT-RNR2 had lower expression in ME/CFS cases in two studies.

Unfortunately, the results don't look very robust...

Remember this Dutch study on Lidocaine injections for Long Covid? A newsarticle now reports that the research was conducted without ethical approval.

ftm.nl/artikelen/po...

My maddening battle with chronic fatigue syndrome: ‘On my worst days, it feels almost demonic’ The long read: I suffered with my mystery illness for decades before gaining a diagnosis. Could retraining my brain be the answer?

My maddening battle with chronic fatigue syndrome: ‘On my worst days, it feels almost demonic’

We already have archive.org for archiving. The problem is paywall bypassing, which is tricky and potentially copyright violation.

Wikipedia blacklists Archive.today, starts removing 695,000 archive links If DDoSing a blog wasn't bad enough, archive site also tampered with web snapshots.

The headline does not convey how completely batshit this story is. The Archive Today (archive.ph etc) admin weaponized the site's captcha to attack a blogger who wrote about them and *altered archived screenshots* as part of the attack.

arstechnica.com/tech-policy/...

Image of a DNA double helix against a soft blue background with light particles. The Action for ME logo appears in the top right corner. Text on the image reads: “Research News – SequenceME and Long Covid study launches. The world’s largest long-read, whole-genome study of any disease.”

Quote from Action for ME CEO Sonya Chowdhury.

Quote from Complex Disorders Alliance CEO Amy Rochlin.

Quote from Schmidt Iniative for Long Covid CEO Dr John Redd

Today we’re delighted to launch Sequence ME & Long Covid - the world’s largest long-read, whole-genome study of any disease 🔬
🧬 This £20 million ground breaking initiative will explore the root causes of ME and Long Covid, with the aim of accelerating progress towards diagnostics and treatments.

Well that's simply not true, as you can see from patient lived experience and clinical studies. Blocking you now as you can't have a civil discussion.

Weir spouts a lot of nonsense about ME. Bateman recommends nervous system regulation as I mentioned. Miglis seems to concentrate on drugs, but I don't see much info on psychosocial factors, which are a major driver of autonomic dysfunction.

be able to find the correct information, which is why I now try to help others.

Yes, it would be great if there were medications, but we don't have any currently, and there are thousands of recovery stories of people like me (and how many more who haven't shared their story?) And no, I wasn't fortunate (as in lucky). I worked on my recovery, as do most. I was just fortunate to

What do autonomic specialists actually do?

Yes, I was in that state myself and I've read many hundreds of recovery stories of patients who were also there. Have you? What do these biomedical consultants actually do, and can you give some examples?

No, there are many severe patients who rest all the time. Long term rest generally doesn't result in recovery. However there are thousands of stories of recovery involving stress reduction and nervous system regulation (including my own). I learned that resting too much wasn't the (entire) answer.

Why?

No, real rehab is addressing the chronic stress that drives the illness. There is no medication that can do that, only knowledgable coaches. That is how patients recover.

Doctors do prescribe medications for symptoms like sleep. There aren't any medications that can fix the autonomic or HPA axis issues, and there are no immune issues we know of. I agree about the danger of taking away energy, and the need for *knowledgable* practitioners, who unfortunately are rare.

The best evidence we have is that reducing stress / allostatic load, and regulating the nervous system is the best treatment. That seems to be how most patients recover, including me. The nervous system and brain are very real!

and that is much better, and seems to be how most patients improve or recover (including myself). Most of us had to do it ourselves though, as the NHS was useless for me 25 years ago, and still is mostly useless unless you get lucky.

Yes, they're very hit and miss. But what specifically was the rehab? Was it reducing stress and nervous system regulation, or inflexible graded exercise without addressing other factors? It used to be the latter (and commonly is), and that of course can make things worse. BACME does the former,

What kind of internal medicine? Bateman recommends brain retraining.

Sorry to hear that. What kind of rehab was that?

1) 🇵🇹 There aren't many ME/CFS studies in Portugal so wanted to highlight this brief paper where Vânia Ribeiro and colleagues tested a short-term pacing Intervention.

Wow, very disturbing and downright wrong. Patients are definitely not "sure they do not want rehabilitation". Quite the opposite. We are desperate for good rehab, and it's quite often not available. Perhaps actually talk to patients? And the comments about the HPA axis and ANS are just plain wrong,

I'm sure BACME will send a polite response and keep doing their good work. It would be better if Edwards & Co could contribute positively to our situation rather than this dangerous nonsense.

as those are two of the few replicated results (including Bull's 2023 HRV study, ironically). It seems Edwards & Co are under the mistaken impression that BACME are using inflexible GET rather than tailored therapy (similar to what physios4me do).

Wow, very disturbing and downright wrong. Patients are definitely not "sure they do not want rehabilitation". Quite the opposite. We are desperate for good rehab, and it's quite often not available. Perhaps actually talk to patients? And the comments about the HPA axis and ANS are just plain wrong,

You seem to be the only troll in the room here. Maybe you should get a new pastime rather than hassling and trolling ME patients.