Dan Wyke

Being immunocompromised is exhausting. Everything I do requires at least five hand-washes! 😮‍💨

I want to say to that young man, take a different path: don't move into that damp basement flat; stop running; move somewhere warm and dry and live in the middle of nowhere. Life won't be perfect but you will have health and strength to face whatever may come. 2/2

Whenever I see old photos of myself I fancy that I see signs of sickness. I seem malnourished and have dark rings around my eyes. I wonder how many embryonic health issues I downplayed or ignored, how many times I left my GP's without any answers. 1/2

I spend my life trying to avoid PEM or recovering from PEM.

College has wrecked my daughter's health. The train she takes has sealed windows and no-one wears a mask. At college there aren't any air purifiers and no-one masks. She's missed about 30-35% of her course through sickness and is understandably worried she won't pass her A-levels.

So waking up with PEM (from yesterday's haircut) is fun. 😩

Dreamt of my former best friend who visited me once eleven years ago then disappeared.

🎯

Anyway what can patients do if they're being neglected or mistreated in hospital? Who can they complain to, the police? Hospitals are so well protected legally that patients have barely a chance when trying to seek redress. Often their options are reduced to submit or discharge. 2/2

It is generally illegal for NHS hospitals in the UK to refuse admission if it is clinically necessary and urgent, but of course there are get-outs and they can refuse admission under specific, reasonable, and lawful grounds - that is, by saying pretty much whatever they want. 1/2

A lot of doctors should not be practicing medicine and a lot of so-called mental health professionals should not be allowed anywhere near a vulnerable patient population.

I suspect it wasn't a coincidence that the Guardian published another misleading article about "chronic fatigue syndrome" [sic] on the same day an informative and accurate discussion about ME/CFS was aired on BBC Radio 4 (Inside Health).

Eugh, after a whole week almost entirely free from PEM and pain, I've picked up another "cold" which has set off myalgia, brain fog and the malaise associated with sickness behaviour. With luck it will pass in a few days but there's always the fear it'll lead to a permanent deterioration.

What can you do? Write to members of Forward ME, expressing your disappointment and urging them to keep on fighting for appropriate care for people with severe-v.severe ME at today's meeting. 3/3 @meassociation.org.uk @actionforme.bsky.social @meactionuk.bsky.social @investinmeresearch.bsky.social

Furthermore no progress has been made on the creation of a national referral service for those with very severe ME. Clearly this failure is unacceptable. It's the equivalent of Oncology failing to provide a care pathway for patients with stage 4 cancer. 2/3

Today (23 Feb) reps from Forward ME are meeting with the DHSC and NHS England to discuss progress on the development of a clinical care pathway for people with mild-moderate ME/CFS. However, crucially, the pathway fails to include people with severe ME. 1/3

Luckily your bullshit radar wasn't impaired.

This is to say that if you become more unwell, it might be worth *carefully* revisiting supps/meds you've put aside in the past. There's a chance you might benefit from them now in a way that you didn't previously.

⚠️ Please be aware that some things could make your ME worse. 2/2

When my ME became more severe, my sensitivity to supplements/meds increased. What I hadn't anticipated was that this could be a good thing. For example, when I was moderate, PQQ felt like it had no effect at all. However, now, I can clearly feel it increasing my energy. 1/2

Keeping Hope Alive - Dan Wyke - Chronic Living Therapy Therapist Dan Wyke shares ways to cope when the news about patient suffering and resistance to change by medical authorities is hard to bear.

Some suggestions for self-care while living with #chronicillness. #mecfs #longcovid
chroniclivingtherapy.com/wyke-hope-al...

Yesterday's discussion about FND highlighted two things: BPS fanatics have convinced neurologists that FND is a legitimate neurological condition; and in turn neurologists have duped many ME/CFS patients into accepting FND as a bona fide neurological diagnosis (see responses).

That this is by far my most used meme says a lot about the state of medicine rn. #MECFS #MyalgicEncephalomyelitis #LongCovid #Neurology #FND

I’m Niko Suvisto, a Finnish photographer, and I’m 99% bedbound due to severe myalgic encephalomyelitis (ME/CFS). I’ve had ME for over a decade, and since 2022 I’ve spent my days confined to my bed 24/7. 1/4

#Photography #MECFS #pwME #SelfDocumentary

Disappointing that clinicians are still confusing chronic fatigue with ME/CFS. Is it deliberate or a sign that many health professionals just don't keep up with the research literature?

Seeing more and more people with ME being discharged from hospital - or just leaving appointments with consultants - with a diagnosis of FND on their records. Why is this happening? Is there a concerted effort by neurologists etc. to replace ME with FND? If so, who instigated it?

Statin update: I've been almost entirely free from nerve pain since stopping statins a week ago. Unexpectedly my Visible HRV reading has also improved - climbing into the 60s for the first time ever. #MyalgicEncephalomyelitis #MECFS

Another young woman is at risk of being starved to death in an NHS hospital, but thank god none of her (usually male) consultants have to learn something new, or heaven forbid, rethink their prejudices about #MyalgicEncephalomyelitis. #MECFS

6/ Take heart from campaigners for social justice, like the late Rev. Jesse Jackson, who said that just by finding a way to "keep hope alive", you are expressing a worthwhile sense of defiance. 4/4

2/ Follow allies in the research and clinical community;

3/ Write to your MP about the cruelty, neglect and abuse faced by people with ME;

4/ Reach out to patients who are struggling;

5/ Share easy-to-follow medical information with healthcare providers; and...

3/4

Given the seemingly implacable opposition people with ME face, it can be tempting to disengage. If you're struggling to keep hope alive, here are some simple actions you can take:

1/ Donate to research or crowdfunding for patients in need;

2/4