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Deteriorative Exertion Intolerance - Doesn't make a claim about etiology or cause, but conveys that the patient is being harmed. Flare ups make it sound very temporary, with flare ups, the likes of Brian Walitt will appear to be correct when they say: With DEI it implies there's damage.

Yes, of course we need a test to prove ME is real. We need to be treated with consideration in order to minimise deterioration of our condition. There are people struggling to get benefits, accommodations at work, appropriate housing, etc. Evidence does change minds, look at this comment:

Reference 89 https://pubmed.ncbi.nlm.nih.gov/38062324/ Reference 90 https://pmc.ncbi.nlm.nih.gov/articles/PMC9141828/ Works for me.

I finally found it. Published research mentioning permanent damage from exercise: https://pmc.ncbi.nlm.nih.gov/articles/PMC9875188/ I hope that this gets added to the fact sheet.

Tired but wired for me means feeling like you've not slept in a day or longer but not feeling sleepy. When I'm tired my Autistic sensory symptoms are worse than usual. You need sleep but can't get any.

https://www.actionforme.org.uk/research-campaigns/our-research-work/ Theres a typo it says mroe instead of more:

The 20 most common conditions people claim PIP for - https://inews.co.uk/news/politics/pip-common-conditions-anxiety-adhd-3567908 Who's definition are they using because it's certainly not ours. No mention of LTSE - Long Term Symptom Exacerbation.

If they're trying to imply poor mental health predisposes people to long Covid then I think that's nonsense. Did it ever occur to them that biological factors caused poor mental health in the first place?

@Yann04 The sensory symptoms of Autistic Burnout can present similarly to ME.

Merged "Evidence supports presence of encephalitis" 1995, Charles Shepherd ***************** https://www.bmj.com/content/310/6990/1330.2

We need to prove harm so we can get treated with consideration to prevent deterioration. This is especially true for permanent deterioraters.

That paper said only 30% of patients reported PEM as their main symptom. Doesn't sound right to me.

I explain it like this. If you just go over your PEM threshold but then rest it off you will usually be ok. However if you go over your Deterioration Threshold then you will permanently lower your PEM threshold. The Deterioration Threshold is lower during PEM and slowly recovers as long as you...

https://www.nhs.uk/conditions/chronic-fatigue-syndrome-cfs/symptoms/

Just to be clear, the diagnostic void in the title of my thread was aimed at permanent deterioraters - patients who get worse from a known trigger (such as exercise) and never recover. It is rarely mentioned in ME advocate publications and I have never met a medical professional who has believed...

Using weak inclusion criteria. Not using questionnaires that measure PEM duration / Severity or crucially how easy PEM is triggered. Using ill suited outcome measures such as the Chalder Fatigue Scale which wouldn't register a permanently lower PEM threshold if baseline symptoms remained the same.

I was thinking about sensory intolerance that gets worse due to exposure of the offending input so a consequential progression rather than a natural progression. I had to stay 11 days in a noisy hospital back in 2013 and it took me a year for my sound sensitivity to get back to baseline. I...

https://journals.lww.com/painrpts/fulltext/2023/08000/low_dose_naltrexone_for_treatment_of_pain_in.3.aspx - Outcome data did not indicate any clinically relevant analgesic efficacy of the LDN treatment in patients with FM. Naltrexone's patent has expired and it's now available as a generic at...

I am highly skeptical of this, I was already in disbelief at the number of illnesses claimed to be treated by LDN, but now cancer? Seems way too good to be true. PS: Bloor Pain Specialists has an unfortunate acronym.

Pretty much, semi deterioraters get worse for months, may be a few years, whereas permanent deterioraters like me never fully recover. I realise that in the absence of empirical evidence, the cut off point is completely arbitrary (Reddit users say if you're not back to baseline after two years...