Thinker

Lover of history , FH, music,art,the outdoors,nuanced debate and more.

[Thinker @Thinker62128938]

🆓resources 🧵
Working thru a programme or working with a coach in a group or 1:1 can be really helpful but there are so many free resources available now - YouTube, fb groups and free courses . If working alone I would recommend reaching out to others recovering / recovered

[Paul Garner @PaulGarnerWoof]

Come across some docs, and charities telling me that #longcovid is "biomedical" and not compatible with "psychological" recovery narratives. My goodness, these people are so out of touch! I asked Mats about this and here is his response
https://t.co/3k301Wlt5a

[Paul Garner @PaulGarnerWoof]

Recovery day! #recoveryispossible #mecfs #longcovid

[Thinker @Thinker62128938]

Read the rest of the results on the blog on The Recovery Channel https://t.co/Hp1MSSY2Iw

[Thinker @Thinker62128938]

Much more opportunity to explore and discuss things on Instagram

[Fiona @Fionas_Story]

If you talk recovery on here, there can be pushback (which is understandable), however Instagram and Facebook are very different.

Large, growing (thriving!!) recovery communities of people who are passionate about what helped them.

Come find us over there if that would help!

[Alan Levinovitz @AlanLevinovitz]

Trial by fire means people trying to destroy my reputation by emailing my agent and editor. (Thankfully they are normal humans who see this for what it is.) Attacking my parenting. (?!?!) So obsessed they are analyzing photos of me I posted for Father’s Day. Is that journalism? If you think so, I’m afraid I’ll have to diagnose you with ExtremelyOnline syndrome.

[Thinker @Thinker62128938]

If only people could understand that it’s all biological and stop trying to insinuate otherwise
Great response from a researcher and author , Mats Lekander

[Paul Garner @PaulGarnerWoof]

Come across some docs, and charities telling me that #longcovid is "biomedical" and not compatible with "psychological" recovery narratives. My goodness, these people are so out of touch! I asked Mats about this and here is his response
https://t.co/3k301Wlt5a

[Thinker @Thinker62128938]

This is SO common . This is just one example The NHS must stop doing this . They don’t have to promise recovery but at least get the facts straight and support people to recovery who can’t afford private options . Many of us are trying to help pple but it’s the NHS job!!!

[Paul Garner @PaulGarnerWoof]

I spoke to someone who recovered from #mecfs. NHS "expert" she was ill for life. "So I decided to find my own way". The NHS is captured by an ideology that denies recovery, is regressive, and discriminates against people in desperate need of help. Shame on you @Nicecomms : your guidance harms people

[Fiona @Fionas_Story]

Dr Jake Hollis really sensitively explaining fatigue and recovery

https://t.co/HAOjqBmK3E

[Dr Sanil Rege FRANZCP | MRCPsych @sanilrege]

Some of the most complex polypharmacy I see occurs in ME/CFS and Long COVID, particularly when additional diagnoses such as fibromyalgia, EDS, MCAS, dysautonomia, chronic pain, insomnia, etc. get added on..🚨

The issue is that medications are often added in response to labels rather than clearly defined clinical domains.

-MCAS = antihistamines or mast-cell stabilisers
-Pain = pregabalin, opioids or ketamine
-Fatigue and cognitive dysfunction = stimulants, modafinil or armodafinil
-Insomnia = BZDs or other agents.

Over time, this can create a 'clinical trap'.

Multiple medications are continued with overlapping mechanisms, unclear targets, uncertain benefits and increasing sensitivity to change.

By the time the patient is referred to psychiatry, the narrative is often that “nothing works”.

But frequently, the more important question is:

What was each medication originally intended to treat: sleep, pain, arousal, orthostatic symptoms, immune reactivity, cognition, mood, sensory sensitivity or avoidance behaviour?

One example is MCAS:

Mast cells are part of first-line immune defence and are responsive to stress, inflammation, infection, autonomic tone, barrier dysfunction and neuroimmune signalling.

Their activation may contribute to symptoms, but non-specific symptoms should not automatically be reduced to a single explanatory label.

MCAS creep is becoming a real issue, where it forms an explanation for a range of symptoms leading to escalating doses of antihistamines.

Interoceptive dysregulation:
A neglected aspect in these conditions is interoceptive dysregulation: instability in the sensing, prediction and interpretation of bodily signals.

This can make symptoms, medication responses and deprescribing highly unpredictable.

Safe prescribing in ME/CFS and Long COVID, therefore, requires more than adding or removing drugs.

It requires rebuilding the target map: which domain is being treated, which mechanism is being inferred, which medication is helping, and which may now be maintaining the system.

And that should start at the outset.

[Glen @AutonomicGC]

Interesting finding from a #fibromyalgia study

Higher awareness of bodily signals.
Higher #alexithymia.
More negative interpretation of ambiguous bodily sensations.

https://t.co/P2Zsh2HesG

[Thinker @Thinker62128938]

This is excellent imo . It drills down into the process, often long, of ‘recovery’ and describes my experience
We can be criticised for not recovering quickly enough , that our recovery tools don’t work but it can take time
If you are at this stage then keep going !

[Cindi Leacock @cin8di]

REASSEMBLY IN ME/CFS 🧩
Using the ChatGPT model of the 6 phases of recovery, Reassembly is the Second Phase

Many people think recovery begins when symptoms disappear.
In my experience, recovery begins much earlier.
It begins when the body starts putting itself back together. 🧩
I call this phase Reassembly.
🛏️ During Stabilization, Phase 1, your goal is simple:
Stop making things worse.
You learn pacing.
You learn nervous system regulation.
You learn to avoid repeated crashes.
You create the conditions for healing.
🧩 Then something interesting happens.
Tiny pieces of function begin returning.
Not all at once.
Not in a straight line.
One piece at a time.
A better night's sleep. 😴
Less sensory overload. 🎧
Improved digestion. 🍲
A little more time sitting upright. 🪑
A short conversation. ☎️
A shower that doesn't require hours of recovery. 🚿
A few minutes outside in the sunshine. ☀️
These may seem insignificant to healthy people.
For someone with ME/CFS, they are major signs of change.
🌱 Reassembly is not about becoming stronger.
Not yet.
It is about becoming whole.
Your body is repairing systems that have been struggling for months or years.
Your nervous system becomes less reactive.
Your energy production becomes more reliable.
Your immune system may become calmer.
Your brain becomes less overwhelmed.
Functions that disappeared begin quietly returning.
⚠️ This phase is often confusing.
Many people feel better and assume they are cured.
Others still have symptoms and assume nothing is improving.
Both conclusions can be wrong.
The question is not:
"Do I still have symptoms?"
The question is:
"Can I do more than I could before?"
📈 Signs of Reassembly may include:
✅ Less time spent resting
✅ More predictable days
✅ Fewer crashes
✅ Better emotional stability
✅ Improved concentration
✅ More time upright
✅ Improved digestion
✅ More interest in life
✅ Feeling moments of your old self returning
❤️ One of the most important signs of Reassembly is hope.
Not wishful thinking.
Evidence.
You begin noticing things that were impossible before are now possible.
You start having normal moments.
Normal conversations.
Normal thoughts about the future.
Normal activities.
Sometimes only for minutes at first.
But those minutes matter.
🌳 Reassembly requires patience.
You cannot force it.
You cannot rush it.
You cannot bully your body into healing.
Your job is simply to provide the conditions that allow healing to continue.
Day after day.
Week after week.
Piece by piece.
Until one day you realize:
You are no longer just surviving.
You are living.

[Thinker @Thinker62128938]

I found @JDHaltigan ‘s thoughts on the science really interesting We need proper debate. Would love these two to take part in a debate with others including those recovering who don’t fit some of their assumptions . They seem to be focussed on the activists.

[Hannah Spier, MD @hannahspierMD]

Long COVID, Chronic Fatigue, and Personality | Live with Dr. J.D. Haltigan
@JDHaltigan

https://t.co/vOQFYsUuo3 via @YouTube

[Thinker @Thinker62128938]

People recovering see research for what it is, an indicator of a possibility.Others work in proof so they think we share science as proof.We don’t need to.We recover because we explore possibilities.

[Alan Levinovitz @AlanLevinovitz]

@elizablue007 A pilot study that proves nothing. Which is exactly how Donnino describes it. Credit to him for being accurate.

[Alan Levinovitz @AlanLevinovitz]

Case study in science, reporting, social media, and long Covid.

Press release comes out. Metformin given during acute COVID-19 infection reduced risk of clinician-diagnosed long COVID by 50%! Hundreds of RTs.

If you actually read the trial, the details are...well, a bit different. For one, the rates of what could conceivably be understood as long Covid are remarkably low! Only 2.6% of subjects report ANY symptoms by day 180.

The difference between the active arm and the placebo arm when it came to self-reported PASC — the primary outcome of the trial?

"Metformin did not exceed the efficacy threshold of 0.975 for PASC."

So the headline — and what's shared on social media — highlights a secondary outcome, namely clinician diagnosed long Covid. Here, there's a statistically significant difference...1.17% in the active arm, .56% in the control. *shrug*

The takeaway from this, if anything, is not about the effectiveness of metformin for preventing PASC. More striking is the remarkably low rates of *any* PASC after 180 days. Only 2.6%!

Needless to say, that's not what gets highlighted, because discussions of long Covid science on social media are supercharged to maximize alarm, overstate the benefits of medications — possibly harming people who seek out those medications and experience side effects — and overstate the significance of study findings...unless a study happens to challenge the "maximize alarm" status quo.

https://t.co/ZtMl2ouvAN

[Alan Levinovitz @AlanLevinovitz]

Really grateful to @Michael_Easter for the opportunity to talk with him about my work on religion, culture, science, and medicine. From long Covid to "natural" goodness to dietary demons, arguments over health are never *just* about science...

[Fiona @Fionas_Story]

The thing I never predicted was other patients laughing at me when I recovered (but then I never expected to recover!)

I don't take it personally for the most part, but I think the community can do better than this

[Thinker @Thinker62128938]

A useful video explaining the biology of the neuroplastic / mb approach .

https://t.co/acNsMFuNBZ

[Thinker @Thinker62128938]

“If validation only confirms the persecutory narrative, the loop may be strengthened.
If the clinician defensively invalidates, the original injury is repeated.”

[Dr Sanil Rege FRANZCP | MRCPsych @sanilrege]

Medical Victimhood: When Pain Becomes Identity 🚨

The concept of medical victimhood (an unfortunate term) intersects with ideas such as interpersonal victimhood and aspects of vulnerable narcissism, where suffering and injustice can become central organising principles.

Importantly, want to be clear - this is not about blaming patients.

Because, Psychiatrists aren't immune either.

We bring our own countertransference, blind spots, wishes to rescue, frustrations, and defensive reactions into the room.

When unrecognised, these can unintentionally feed a persecutory spiral, where the patient again feels dismissed, controlled, harmed or not believed.

The tragedy is that the original experience of disappointment, invalidation, or even genuine harm, may be repeated within the therapeutic relationship itself.

This is where PAIN becomes central.

Physical + Psychological PAIN

Not only physical pain, but psychological pain: humiliation, betrayal, rejection, not being believed, loss of agency, and the breakdown of trust.

Pain can then serve several functions:

Pain becomes par excellence a means of assuaging guilt and thereby influences object relationships. [Engel, 1959]

1/ It communicates distress when language is insufficient.

2/ It legitimises the need for care without the full vulnerability of mutual dependence.

3/ It preserves coherence: “this is why my life changed.”

4/ It protects against unbearable uncertainty by locating causality in a single external object.

5/ It can transform medication, clinician or system into a persecutory object.

The suffering is REAL.

The key question is whether the experience of harm has become the principal organising narrative.

In treatment, validation is necessary but not sufficient.

If validation only confirms the persecutory narrative, the loop may be strengthened.

If the clinician defensively invalidates, the original injury is repeated.

The task is a difficult middle position:

“I believe your suffering.”

AND

“Can we remain curious about what else may be happening?”

[David Clarke, MD @daveclarkemd]

Psychologists call it status quo bias. The mind prefers the familiar over the unfamiliar, even when the familiar involves suffering.

The known costs feel safer than the unknown ones.

We are wired to prefer the devil we know.

[Thinker @Thinker62128938]

This certainly packs a punch !
It doesn’t talk about the brain & predictive coding theories which take away the need for blame but still very thought provoking !
When v severe it takes a lot to find any agency amidst the misinformation and scaremongering.

[Hannah Spier, MD @hannahspierMD]

https://t.co/Qlc03PFysz