@OttoKolbl @ChiraleStruktur @CK65375 …is typical in healthy autistic people, but perhaps this predisposition leads to earlier onset of the physical effects you describe here.
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M Stevenson
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@OttoKolbl @ChiraleStruktur @CK65375 This is so interesting. Thank you. I have to admit I haven’t yet managed to read the full article. I am interested in the connections with autism. My understanding is that autistic people are more likely to suffer from M.E. than non-autistic people. Sound and light sensitivity …
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By @CK65375 and me:
Auditory and visual hypersensitivity are often presented as "symptoms." They are also destructive pathomechanisms and potential biomarkers for many cases of #MECFS and #LongCovid which can be tested using evoked potential EEG.
@ottokolbl/auditory-and-visual-hypersensitivity-in-me-cfs-and-long-covid-symptom-or-destructive-c8f35c6ef801" target="_blank" rel="nofollow noopener">medium.com/@ottokolbl/aud…
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@julie_bush @AndrewG76201347 Hope it’s OK to jump in and ask, did you try B1 supplements before injections? Is there a similar issue with absorption with B1 that makes injections more effective?
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@AndrewG76201347 B12 and B1 (thiamine) injections have helped me so much. i grieve the amount of time i could have had if i had discovered this sooner. on the MEpedia, they suggest doses of B1 of up to 600 mg to 1200 mg a day (they cite studies). you can find the page online
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It’s time to thank those of you who drew my attention to b12 in #MECFS & the limitations on standard testing & particularly the Pluvinage et al 2024 paper on the CD320 autoantibody form of B12 affecting the CNS. Daily subcut b12 is significantly helping me despite normal…
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@PanickedFoodie I feel we need better understanding of the psychiatric effects of vitamin and mineral deficiencies. B12 is used in medication resistant depression- why on earth not try it first?! Similarly iron, vit D, folate …
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who could benefit from these medications and who might be harmed. And I do think there needs to be much closer monitoring of people on these medications, and allowing people to openly share the side effects that they are experiencing.
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My guess, is that they are basing these things off of a 2007 FDA finding where SSRIs can cause aggression, homicidal tendencies, suicidal ideation, etc, in younger people.
It is a contentious finding, and it is still up for debate.
bmj.com/content/358/bm…
liz 💥@lizaboth
Kind of crazy that the same people who blame every mass shooting on mental illness are now trying to restrict access to anti-depressants
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@angryhacademic I have the rhinitis tinnitus combo. Gradual onset but getting noticeably worse. I want to get back to using nasal rinses again…only thing that seems to help clear my nose but I find it hard to make myself do it! Will pay attention to the effect on tinnitus if/when I restart.
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For example, pulsatile tinnitus and rhinitis (blocked nose) often co-occur - maybe that suggests something about blood flow?? 🤷🏻♀️
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Saw ENT today about pulsatile tinnitus. He was nice but very "NHS" about it.
He will order me a MRI (without contrast). He said this nearly always comes back normal and if thats the case the conclusion is generally that the brain has "sensitised" itself to the sounds 🧵
Harriet Carroll: Long Covid Scientific Consultancy@angryhacademic
NICE guidelines Tinnitus nice.org.uk/guidance/ng155… "Refer immediately, in line with the NICE guideline on suspected neurological conditions, people with tinnitus associated with: Sudden onset of significant neuro symptoms Acute uncontrolled vestibular symptoms Suspected stroke"
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@B12Henk @itisagain I agree. I contacted the lab, sent links to papers that clearly show the need for
paediatric ranges, but it needs a formal process to look into it and I’ve not had the energy to initiate that yet.
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Een meisje van 8 jaar met een serum B12 van 326 en ze voelt zich niet goed. De moeder krijgt al enkele jaren B12-injecties vanwege een extreem tekort. De huisarts ziet geen B12 probleem bij het kind.
Het nadeel van geen B12 referentiewaarden voor kinderen.
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@B12Henk @itisagain In Scotland the Homocysteine reference range is set at <20 umol/L. This is used for adults and children alike. 🤯
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@angryhacademic Was all this testing done through the NHS? Thank you for sharing all of this.
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Every patient will be different, but hopefully this case shows that it is possible to systematically work through common post-infection/vaccine diagnoses within clinical pathways, whilst highlighting the importance of further investigation when treatment doesn't resolve symptoms
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Delighted to say that we (@cazd45 @DeansKevin et al.) have got our case study of post-vaccine syndrome updated:
researchsquare.com/article/rs-142…
Key takeaway is that within clinical pathways, we found evidence of POTS, MCAS, clotting, metabolic, and endocrine dysfunction 🧵
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@Szygy3 @PaulWhiteleyPhD Where is a good place to start to look into that?
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@Stevenson4444 @PaulWhiteleyPhD Mast cell activation accounts for this - the majority of autistics have a mast cell disease. It's treatable.
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And a reminder that stuff that says people can 'think their way out of' this devastating illness or that 'it's all just deconditioning' has served no-one well. ME is a biological illness and progress along those lines, although slow, is being made.
BBC News (UK)@BBCNews
Our son loved the outdoors – invisible illness means he now can't walk or talk bbc.in/4sxUCVW
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@Naomi_D_Harvey @mecfsskeptic Neither B12 nor thyroid hormones are tested in the standard pregnancy blood tests. Cost saving ?!
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@Naomi_D_Harvey @mecfsskeptic Yes. Also (later peak) around childbearing age. I suspect I was hypothyroid and B12 deficient certainly during my second pregnancy and my body wasn’t able to recover. Reduced ability to fight off the many bugs you are around with small children and for me a slow decline.
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1) Two age peaks: a fascinating paper confirmed two peaks for when people get ME/CFS: around 16 years old and in the mid thirties.
The early onset in adolescence was associated with severe ME/CFS, an infectious onset, and having relatives with the disease.
A brief summary...
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@AutisticDoctor @stimimi Perhaps more to do with different types of autism, influenced by varying biological differences. Homocysteine is known to be high in many autistic people. High homocysteine is also associated with suicide risk. Screen + treat. Or just treat given the unreliability of B12 testing.
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In autism the difference activists assert they are autistic, not people with autism. Those (including parents) who considered autism a disease/disorder campaign for better recognition, prevention, treatment and support. This disagreement has become heated. Why is this?
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@Naomi_D_Harvey If you don’t mind me asking, how did you find out you had hypercoagulated blood?
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The cardiologist was dumbfounded because he couldn’t understand why my heart wasn’t getting oxygen, and admitted it must be due to my ME/CFS but it was outside his remit as I didn’t have calcified arteries. I had hypercoagulated blood though, with I had to self treat.
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This might sound extreme, but it’s not. I nearly did this to myself in 2022 when I hadn’t accepted I couldn’t go out to walk anymore; just 10m walking slower than a 90 year old was giving me chest pains, SOB etc & I ended up in A&E diagnosed with angina, with no blockage.
Naomi Harvey “PhD Witch” #WearAMask@Naomi_D_Harvey
@MaskedHottiee It really depends how severe your ME is, but it’s possible you’d have a heart attack if you tried to run with severe ME. A British MP with ME died leaving the gym in 1988 after being advised to exercise, despite becoming short of breath on slight inclines me-pedia.org/wiki/Brynmor_J…
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@Naomi_D_Harvey @surf4children Yes - but also give that trial the time and frequency of injections needed to make a difference. I think many GPs expect a dramatic response to loading doses. My response was much slower - needed 8 weeks of 3x a week to be sure.
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@surf4children @Stevenson4444 Unfortunately, with B12 there are no tests that can ever rule it out as in many case people can have a deficiency despite totally normal serum B12, MMA and homocysteine. The best advice is that if symptom are present, then trial B12 injections to see if they help.
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🚨‼️Q/A session on!
I’m on a night shift and will spend the next 13 hours in my hospital.
If you have questions or curiosities either on the last published cases, or #longcovid #mecfs in general, or in general on my job tonight is the right time to talk!
Best
Danilo
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@Naomi_D_Harvey @surf4children but also seems unheard of by CAMHS, GPs, UK paediatricians…. It’s so hard to get anyone to consider these conditions in the UK. Lack of knowledge and an over-reliance on unreliable blood tests.
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@Stevenson4444 @surf4children Yep! That’s likely due to autoimmune folate deficiency, where B9 is low in the CNS only. That’s commonly found in autism.
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@surf4children @Naomi_D_Harvey As Naomi said it doesn’t seem to be well known. Homocysteine is often high in autistic people, a lot of autistic people develop ME/CFS…I think the links are compelling…but there is so much else too!
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@Naomi_D_Harvey @Stevenson4444 thanks a lot! I am admittedly ignorant on this but I promise i’ll study more
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@surf4children @Naomi_D_Harvey Methylmalonic acid. It was normal for me and my daughter but homocysteine was above range for us both. Some have raised MMA but normal homocysteine. This is an excellent presentation youtu.be/raOjRKG1eZg?si…
YouTube
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@Stevenson4444 @Naomi_D_Harvey what is MMA
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@surf4children @Naomi_D_Harvey Are MMA and homocysteine used alongside standard tests for a better evaluation? I wonder if the less easy to find deficiencies are more prevalent in those with ME/CFS
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@surf4children @Naomi_D_Harvey Do you look for B12 and folate deficiency in your patients? I suspect my B12 and folate have been a problem since I was young and wonder whether these long term deficiencies may have some bearing on my ME diagnosis later in life.
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