Thinking about that time when I almost died during surgery due to reaction to anaesthesia, and in the next surgery the anaesthetist wrote me a letter to document the situation due to my “anxieties around anaesthesia” Sir, I almost died?! Psychologisation is dangerous

The National

From Chris Ponting.scienceillustrated.com/healt…

From Professor Chris Ponting on #ME:

My unwavering faith in British bureaucracy (having grown up in a latin country) has been shattered. Requested my medical records, Hospital gave me a deadline to send them to me, AND THEY FAILED. I need my records for my appointment on Tuesday 😭😭😭

Today I explained to my physiotherapist (shoulder problem), what PEM is, and that No, brain retraining does not help with long covid

Look at this field of people who refused to think positively enough

Brain-retraining logic applied to a broken leg to show how illogical it is: Stumble, notice the leg, get anxious about standing, avoid standing, standing feels harder, avoid it more. Conclusion: no fracture, just a fear-avoidance loop. Reassurance and graded standing will fix it.

Hi Hannah, Your comment is not just wrong. It is deeply disrespectful and genuinely inhumane. Please, before speaking with such certainty, look at the recent medical literature on ME/CFS. This disease is not psychological. It is a serious, multi-system biological illness involving the immune system, nervous system, autonomic function, metabolism, circulation, and energy production. I’m university educated. I was a tech founder and CEO. I had a beautiful girlfriend, a full life, ambition, independence, and every reason to want to be out in the world. I snowboarded, fly-fished, hiked, travelled the world, worked relentlessly, and lived in the mountains because being outdoors was one of the great loves of my life. From my bedroom window, I can still see the peaks I would give almost anything to hike again. I would cut off my arms and legs if it meant having the physical capacity to live normally again. I now have very severe ME/CFS with extreme physical, cognitive, and sensory disability. I lost my work. I lost my partner of seven years. I lost my ability to have sex. My ability to speak is greatly diminished. I cannot tolerate light, sound, television, podcasts, reading, touch, human presence, or even emotional expression. Crying, laughing, or pushing slightly too hard can leave me with severe physical symptom exacerbation for days. Sometimes, if I push too far, the worsening is permanent. This is not anxiety. This is not deconditioning. This is not a lack of motivation. This is not a belief system. Yes, the CNS and autonomic nervous system are profoundly dysfunctional, but that is only part of the picture. The depth of biological disruption in ME/CFS is staggering. The suffering is almost impossible to describe. It is not tiredness. It is not burnout. It is a state of being trapped inside a body that punishes basic human activity. Words like yours are not harmless. They contribute to the stigma that leaves severely ill people dismissed, neglected, and abandoned while they are already living through something close to hell. Please open your eyes. Read the science. Listen to patients. This disease is real, and the people suffering from it deserve basic human respect. The opinion you have is outdated and lacking any serious scientific basis. Please, just for a moment, imagine that you might be wrong. Imagine that the people living with this disease are not lazy, anxious, deconditioned, or mistaken about their own bodies. Imagine that they are describing a real biological illness that medicine has failed to properly understand for decades. Because that is the reality.

This is the article to amplify this week. “Long COVID confirmed a difficult reality: modern healthcare systems are optimized for diseases that can be rapidly diagnosed, categorized, and treated — not illnesses that require uncertainty tolerance, longitudinal care, and deep listening.” Long COVID Changed Everything open.substack.com/pub/britta…

Boyfriend got bitten by a tick and found it and removed it yesterday morning (he went camping this weekend). Does he need antibiotics?

Would be really amazing (for M.E patients) if Kate developed M.E. Oh finally someone rich enough cares. Imagine the awareness posts Bryan would make 🤩

Examining Kate’s 1% She has suspected endometriosis. This affects at least 1 in 10 women, likely more. Here she’s getting an ultrasound. Historically you needed surgery just to diagnose it (incisions are made in the abdomen). We're doing a non-invasive route. Typically women live with endometriosis for 7-10 years before being diagnosed. It’s the leading reason women aged 30 to 34 get hysterectomies (permanent surgery to entirely remove the uterus). This condition is where endometrial-like tissue starts growing outside the uterus, in ovaries, bowel, bladder, even the diaphragm. This tissue inflames, scars, and glues organs together. Our first step is to find out if @_katetolo has it. Initial measurements we’re doing: trans vaginal ultrasound pelvic MRI w and w/o contrast hormonal labs All during the early part of her cycle to get the clearest picture. During her ultrasound, a slim probe, about the width of two fingers, 10-12 inches long (although only a small portion is inserted) is covered with a protective sheath and lubricant and gently inserted into the vagina (patient has to empty their bladder first). This creates real-time images of the uterus, ovaries, and surrounding pelvic structures. While inserted, the probe is turned 90 degrees to evaluate all the various structures, angles and views. There is no radiation exposure. The technician is looking for scarring, ovarian cysts, adhesions, and for organs that are fused together with tissue. This ultrasound can confirm endometriosis but it cannot rule it out. What endo does to the body: 90% report pelvic pain 50% report severe fatigue 26% report infertility. However many sources cite 30 to 50 percent. 50% experience pain during sex. Many have pain with ovulation, bowel movements, and urination Severe bloating called “endo belly” where the abdomen visibly distends There are a handful of theories about why endometriosis develops but the honest answer is no one is quite sure. We’ll keep you posted on her results.

Pacing is not a treatment option for long COVID, it never was and never will be. Pacing cannot help with ongoing inflammation, tissue remodeling, or structural changes. At best, it is a necessary compromise. And no, pacing should not be considered a treatment option for ME either

So, i changed beta-blocker brand and these are crap. I was advised to up the dose to compensate, urgh! But that worked! Will run out sooner. Time to find out if my Portuguese prescriptions are accepted in the UK! Stay tuned.

Brilliant. Credit to themsbloke. Nice to see someone with another illness advocate for ME.

If you’re interested in ordering the @amaticahealth test and have any specific questions you’ve been wanting to ask, but don’t want to do so publicly. Email support@amaticahealth.com Josh will get back to you as soon as possible!

NIH and UCSF researchers argue Long COVID trials should begin now. They call for disease modifying trials of immunomodulators, antivirals, neurological drugs, GLP-1 drugs, monoclonal antibodies and devices. thelancet.com/journals/eclin…