Urgent Appeal: Help Anna #Escape#Abuse – Time is Running Out!
🚨EMERGENCY: Anna's Life Hangs in the Balance – Act NOW to Rescue Her from #Abuse and #Neglect!
Anna, an Australian woman battling severe #MyalgicEncephalomyelitis (#ME) for over 20 years, is trapped in a toxic home with abusive family members. Bedbound and forced to stay in a dark room, she is vulnerable and that vulnerability is taken advantage of. She is not allowed access to #disability aids or workers and needs approval for all mailed items including food, which may be binned or sold regardless. There are no steady rules, just excuses for her abuse. She faces deliberate exposure to sensory overload, days without food, constant yelling, stolen belongings, and three #COVID infections in 15 months due to unmasked family members. She now has #LongCovid as well. Compounded by #endometriosis, #hypothyroidism, #POTS, #chronicpain, and more - her health is deteriorating rapidly.
** Her doctor fears that staying in this environment will kill her.**
#Australia's #healthcare, #disability, and #domesticviolence systems have failed her catastrophically,. This systemic neglect has created a life-threatening crisis – and for Anna, it's already too late to wait.
Anna's Critical Needs – Your Support Can Save Her:
Safe Housing ASAP: Anna desperately needs a quiet room in a COVID-conscious (masking) home in #Melbourne. She can pay rent $250 per week, with funded meals and limited care hours; long-term help may qualify for Carer's Allowance. She has indicated she may need incidental help.
Secure Relocation: Specialized transport to reduce infection risks and suit her ME. Funds needed for moving costs and aids until #NDIS access.
Expert Advocacy: A #DisabilityAdvocate for complex cases to navigate the system with her. Even a friend just willing to help. She can’t do this alone.
Communication Aid (#Australia, preferably #Victoria): Someone to handle phone tasks – all documents provided. Brain injury has made phone use impossible.
-This is a Shameful Failure – But You Can Help In a resource-rich nation, no one should rot in abuse while services ignore them. Don't let Anna become a statistic.
the figure on the manila anatomical bookmark is against a dark ink background. their body is colored in dark green-blue, with vibrant trans pride flag colors across their body diagonally, the white at their lower abdomen. Their face is drawn in extreme concern. A speech bubble shows them asking, "is there a less invasive option?" a drawing of a disembodied white coat,with jagged edges and allmost glitch-like shaking lines is before them. The white coat also has a speech bubble, and replies, "this is the less invasive option."
If you experience orthostatic intolerance or have POTS, this is for you:
I recently came across this recording of a 2018 talk by a Stanford University Dr about how symptoms of POTS can be almost identical to symptoms of a CSF leak.
Technically it’s possible to be given BOTH diagnoses and they can both be correct since POTS is a diagnosis of symptoms, not cause, and a CSF leak can cause POTS symptoms.
Crucially: with POTS you must learn to live with it, but with a CSF leak it is often (but not always) treatable with the potential for a full recovery!
I am shocked because I thought a CSF leak was a dramatic thing that was always obvious to medical professionals, but this is not the case! Most medical professionals won’t realise how hard it can be to detect a CSF leak especially in the spine, and that they are rare but not as rare as they may believe, and how some of them can be “spontaneous” (versus due to surgery or injury) because of connective tissues disorders (e.g. hEDS) or other risk factors.
The Video:
CSF Leaks - What the POTS Community Should Know, presented by Dr. Ian Carroll, Stanford University
Description:
Dr. Ian Carroll, Assistant Professor of Anesthesiology, Perioperative & Pain Medicine at Stanford University, presented this informative lecture on the similarities between POTS and cerebral spinal fluid leaks, and the need to carefully consider the possibility of a leak in patients with orthostatic headaches, during Dysautonomia International's 2018 Conference in Nashville, TN.
Hospital Guidance: Post-Exertional Malaise (PEM) - Care Requirements
CLINICAL WARNING: When the patient is in PEM, any extra activity (sitting up, walking, answering questions) can worsen symptoms, reset recovery, and accelerate long-term decline. Strict protection of rest is required.
Overnight Care Guidance
Lighting and Noise: Keep the room dark and silent overnight. Avoid unnecessary door openings. Use minimal light if checks are required.
Sleep Protection: Do not wake for routine observations unless clinically essential. Cluster any checks to reduce disturbance.
Environment: Ensure call bell, water, and medications are within reach before settling for the night.
Communication: Avoid questions or conversation if the patient wakes. Speak quietly and keep interactions minimal.
Escalation: If pain, tachycardia, or instability occurs, respond calmly, minimise sensory exposure, and escalate as clinically indicated.
Documentation: Overnight staff should record sleep protection strategies and PEM episode status at shift start and end.
Personal Care - Showering and Hygiene
Daily shower prompts are not required. Please be guided by the patient as to when capacity allows.
General Principle: Patient will indicate readiness for washing or showering. No need to prompt daily. Frequency: Showering may be limited to once a week or less during severe PEM. Over-exertion can worsen symptoms.
Alternatives: Patient may use wet wipes or gentle seated wash in lieu of shower as tolerated.
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"But it’s not difficult to see how the emphasis of such stories could be misconstrued by a casual reader unfamiliar with the reality of ME; or why such publicity might be of concern to a patient population routinely told to pull itself together, try harder, and get outside more."
@mecfs #MyalgicEncephalomyelitis#ChronicFatigueSyndrome#MEcfs#CFS#PwME
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"But media coverage such as this can have repercussions for the wider ME community, both in terms of the influence on public perception of the illness, and also the emotional impact on individuals living with it."
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"Perhaps the hardest [feelings] of all [following reading a recovery story] being the painful self-doubt of questioning whether, if it’s all as straightforward as it sounds, I’m trying hard enough, experimenting with new treatments enough, & wanting to recover enough"
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"A large number [with ME] also lack family support, financial security & suitable housing. When basic survival consumes all resources, anything more is an unattainable luxury. In any story of recovery or improvement, there will always be a sound helping of good fortune."
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"But the silent story for most of us is that we “decided to get better” but couldn’t; started doing a little more each day but had a relapse; tried yet another treatment and found it wanting; and then, having lost everything, built the best life we could from the ruins."
This is not medical advice, this is a summary of things I have read from various studies, journalists, and newsletters, and what I try to prioritize for myself. I send this to loved ones who accept my offer for it when they or someone they know gets infected, and I figured I should make it more broadly accessible.
Ways to Lower Your Risk of Long Covid &
Lower The Severity of A Reinfection’s Worsening Your Long Covid
Medicines, Vitamins, and Supplements
Increase Vitamin D ASAP and sustain it for at least a month. It’s a reserve vitamin so you can’t cram it all in 2 days, and should not. It is possible to have too much Vitamins A & D, so please be mindful of dosing.
Increase Iron ASAP and sustain it, similarly to above.
Zinc, like Vitamin D, is key to our immune system’s functioning & signaling. Zinc can help boost underactive immune features, calm overactive immune features, and reduce inflammation. Additionally, studies have found Zinc levels are significantly reduced during Covid infection, and reduced in relationship to severity of infection, so it makes sense to combat this.
H1 Antihistamines have preliminary research to support them decreasing LC risk and SIGNIFICANT research supporting them as treatments in Covid-19 infections, plus ways to lower your Covid infection risk overall. All H1 antihistamines have shown in vitro benefits, however the ones I’ve seen most studied in humans are cetirizine/zyrtec, ebastine, azelastine, and loratadine. Most trials in humans used modern antihistamines, which I agree with. I do not generally suggest any first generation antihistamines including Dramamine, Benadryl, NyQuil, or their generic versions unless you have a medical reason for choosing them & their adverse anticholinergic effects. H1 antihistamines are typically available without a prescription in the US.
A recent study from Germany found a Nasal H1 Antihistamine, Azelastine Nasal Spray reduced covid infections by 69% (nice). More research is needed, but a 2x a day dose of Azelastine, or 3x a day dose of German Azelastine is extrapolated to be beneficial from a long covid precaution perspective, similarly to other H1 medications above. This is typically available without a prescription, and is inexpensive in the US.
H2 Antihistamines, especially Famotidine/Pepcid, reduce both symptom severity and viral load, leading to an earlier resolution of infection. These are available without a prescription in the US, and typically inexpensive.
Paxlovid is less effective at decreasing Long Covid risk in the acute phase, but does have other benefits, even if started late. It is additionally showing progress as part of a combination therapy. Stock up on mints and cough drops though.
Magnesium, Vitamin C and other immune-boosters can be very beneficial IF you are not autoimmune/don’t have other relevant considerations.
If you are on trans masculine HRT or similar medications please continue. Men & NB people with similar levels of hormones have lower risk and sometimes lower symptom burden than women & NB folks with similar hormone levels. We aren’t sure why yet.
Other OTC items which might help lower the viral load or otherwise make the acute infection less impactful:
A mouth wash containing PVP-I [povidone-iodine] or CPC [cetylpyridinium chloride]. This can be used multiple times a day.
Green tea (ECGC)
Hibiscus tea (ACE2)
Antioxidants and omega-3 fatty acids (including flaxseed oil, fish oil) help remove oxidative stress, which is helpful in both acute Covid (infection and replication causes OS) and in multiple forms of Long Covid. I’ve read . Antioxidants are vitamins A, C, E, Selenium (Se), and Zinc (Zn). Vitamin A is possible to overdo, so please be mindful of dosing.
Transmission Precautions (how to protect people you live with, etc):
COVID is most often transmitted via the air, not droplets like we thought early in the pandemic. As such:
Fresh air will be your easiest and most effective option, assuming climate safety. Even a slightly open window will be MUCH better than closed windows.
Masks are extremely effective, especially when both parties wear them. Respirators (aka a mask with a safety rating such as N95, KN95, KF94, P2, FFP2, DS) are best, but anything is better than none. Try to get as good of a seal as you can/minimize air leaks.
Air filtering with HEPA filters is great if you have access and funds. Try to make sure the filter(s) you use are sufficient for the square footage of the space. Earlier variants had a filter goal of 6 air changes per hour (ACH), but anything is better than nothing, especially when combined with opened windows, etc. If the filters are insufficient for the square footage/meterage or ACH, place them for largest impact: for example close to the sick person, in areas with poor ventilation, or areas of high social contact.
If HEPA filters are too expensive or unavailable, try to make a Corsi-Rosenthal Box (a DIY air filter alternative using MERV13+ filters and a box fan, free directions abound online). Same strategies as above.
Last home air filter precaution: most climate control systems have a filter, and if that filter is already or can easily be changed to a MERV13+ filter, that will be an additional help.
If you must run errands/go to work/etc, please prioritize one of the rated respirators above. Try to do curbside or other distanced, outdoor pickup options where available.
There are nasal precaution options including the aforementioned OTC H1 Antihistamine Azelastine and Profi Spray (which is highly effective, but their science was measured with nasal swab application, not spray).
It doesn’t take a lot: We have stopped the acute spread of Covid in our home two times (that we know of!–the real number is probably much higher) by using only a couple strategically placed HEPAs and window cracking.
If you feel any sustained exhaustion or fatigue, please rest and do not push yourself for at least two-three months after infection, including physical and mental exertion. A lot of us long haulers had an inkling early on that something was off but we pushed ourselves to be “back to normal” and that caused immense lasting harm. It might sound like a long time now, but a few months is a short time in comparison to the rest of your life. Trust me.
I wish I had read this earlier: Indefinitely Ill – Post-Covid Fatigue
Pacing is the most helpful tool I have found for my health, and has been practiced by people with post-viral illness for a long time.
Intro to pacing: ME Action’s Stop Rest Pace
Scheduling breaks with reminder alerts is how I do it, and by having specific things I look forward to about downtime (slowed audiobooks, a nature soundscape, etc). Some people are better at remembering on their own.
Lastly, I recommend using a symptom tracker even for initial infection (and that couple month period after). Hopefully before too long there won’t be many symptoms to track and things’ll be mostly a-ok, and it won’t be needed, but the way covid makes the brain all squiggly, IMO tracking symptoms is super important for understanding what your body needs to have your best chance at maintaining your current health!
The app Visible is popular in some LC communities, but a journal or calendar is a-ok too. It helps to check in with your body and see how much feels safe to do and what to prioritize. (Visible is free for symptom tracking and I recommend the free version short-term. If you end up needing long term pacing help and want to include the paid wearable, though here’s my coupon code: https://join.makevisible.com/68284299c4dc3e )
**Thank you for taking care of yourself and your communities. We need all the precautions, kindness, and care we can get right now.**Additional Covid Safety info from someone else’s patreon: https://www.patreon.com/posts/huge-free-covid-86871700
the figure on the bookmark is silhouetted in outline vs the shape of a house, outlined in red and filled with purpley blue textures. the head of the figure, angled to the side, is attacked from all angles with dark rough textures of inky depths with red/rust particles, and purple angular lines pointing inwards, and breaking past the lines of the house. the figure stands on a square of purple ink as well, which balances the composition
Mary previously said we could describe it as follows:
A fictionalisation of the struggles of a woman with #MyalgicEncephalomyelitis (ME), and the obstacles she faces on a daily basis as a wheelchair-using mature student.
My vertebrae are moving. Like my neck is. They're doing this thing where they click or pop and I get lots of symptoms from it. It can feel like swelling or pinches nerves. I get the feeling there's not enough blood in my brain, burning pain in my fingers, numbness weakness paralysis.
What could be swelling there? Who would I see to get care?
Artist and writer, Corina Duyn, wrote a very powerful letter to Brendan about her experience living in care since the age of 59. She has lived with M.E. for more than 25 years. Corina’s book of collages “In Bed I Cut Words” is published by Creative Ireland, and distributed by the Irish Hospice Foundation. CorinaDuyn.com and corinaduyn.blogspot.com
Please don’t give me contacts for domestic violence orgs. They don’t help disabled people with housing & only offer counselling. Also, that list of disability advocates going around for #Melbourne#Australia (where I am) is outdated - there aren’t any in my catchment. So I’m looking for volunteers with some background.
Subject: sharing my experience of a weighted blanket as an autistic + ADHD person with ME/CFS.
Brief summary:
If you recognise that you have muscle weakness from having ME/CFS, I strongly recommend NOT getting a full size weighted blanket designed for a bed. Instead, try something like a lap pad, and definitely opt for the lighter weights. These smaller blankets / pads can still be used over you when you sleep, but you may be able to move them yourself and not struggle at night under heavy weights. Moving or removing a weighted blanket of any size, let alone in the middle of the night, can take a lot of arm muscle and core strength, balance, etc. For those people who would find this would be a huge struggle, I wouldn’t even recommend a weighted blanket at ALL. Instead, explore something else like compression clothing or supports.
It’s also important to consider if you have difficulty regulating your body temperature and might experience night sweats etc. A weighted blanket, even the “cooling” weighted blanket that I bought, is still a blanket. It’s a layer that traps some heat. When you go through temperature changes at night, this can mean needing to adjust the heavy blanket multiple times. If it’s tricky doing this with a regular blanket, don’t get a full size and/or weighted blanket.
More info about my experience:
The “cooling” weighted blanket I have is not custom made for my height and weight as is usually advised. When I asked a specialist retailer what size and weight would suit me, they recommended shorter (i.e. less surface area to distribute the weight) and much heavier. My current blanket is 4.7kg and it’s too heavy for me to move at night. They recommended a smaller sized 6kg blanket. Had I bought a custom one like this, I would have had huge issues at night, and been stuck with it and may have had issues rehoming it if it was made from custom fabric patterns and unusual colours too, etc.
I’m close to donating my blankets (they were buy-one-get-one-free so I have two). And instead, I am considering something that only covers my lower legs. This is because, after experimenting, I realised that is the area that I benefit most from the weight to help me sleep. On hot summer nights when I’m only covered in a sheet, that’s the area of my body that feels the most “noisy” and restless. So I may opt for a smaller, custom, light weight blanket or just a weighted lap pad might be best.
Hope this helps others consider their options. When I was exploring weighted blankets I couldn’t find straight forward advice relevant to me. Loads of neurodivergent people say how beneficial they are, and people with certain types of chronic pain, etc… but it was harder to find experience of others who are in a similar position to me being both ND and having ME/CFS, POTS.
Subject: sharing my novel ways of keeping cool in hot weather with ME/CFS, dysautonomia, POTS:
When I’m in warm environments my body doesn’t usually tell me when I’m too warm. It doesn’t start sweating or anything like that and I have no conscious awareness of it whatsoever. Instead, I start to feel deeply unwell and very quickly. This is very confusing. Due to being autistic as well, this can lead very quickly into overwhelm which results in the exhausting and humiliating experience of an autistic meltdown (an involuntary response to overwhelm that is physically exhausting to experience).
I only discovered all this by accident a few years ago (after experiencing it since I got ME/CFS 15-16 years ago!)
Now I know about it, and if I remember, I can take steps to deliberately cool myself down as quickly as possible. (And even prevent it in the first place!)
When I do this, it feels just like a miracle cure! I go from feeling so awful I am genuinely close to calling an ambulance, unsure when I’ll collapse… to perfectly fine again and wondering what all the fuss was about!
There are some barriers stopping me from cooling myself off, though. These are:
Genuinely having no clue I’m too hot because symptoms are totally different to “normal” feelings of being too hot.
Dependence on my memory to link what I’m experiencing with needing to cool down (hello to my ADHD and brain fog in ME/CFS too!)
When this happens, I almost always feel like I’m currently at a “perfect” temperature. I often say at the time that I feel like I’m already at the “perfect temperature”, “just right”. Plus, I hate the sensation of cool air on my skin (feels like glass shards to me) so my instinct here is to fight against my knowledge that I need to cool off. But, instead, I need to bring awareness to all this to fight my instincts.
However! I have found something that is a good in-between and works more quickly than taking clothing layers off or finding a cooling fan, etc.
I have discovered that it is my head that needs to cool down most of all.
So, now, I will get some cool water and wet a cloth, holding it against my face. Then I’ll wet the top of my hair a little (so it can cool me like sweat does). Only then I’ll start to use the cool, damp cloth on areas where blood vessels are closer to the skin, but I will do this gradually so I don’t shock myself and I keep returning to cool my forehead, face, etc: neck, upper chest, inner wrists, inner arms, inner ankles, inner lower legs.
And most recently, I decided to explore head cooling caps to help with this even more.
I found this (pictured) cooling gel cap that’s made for people who get migraines or headaches. You can get various designs, but this one can reach down over my eyes, over my ears, or I can wear it higher, like a head band. Plus I can pull my hair out the hole at the top if I need.
This cap has a cooling sensation even without putting it in the fridge or freezer. But I will have it ready in the fridge during the coming few days of heatwave here where I am in the UK. I’m hoping this will help prevent those crushing feelings of not being able to cope and things escalating to an autistic meltdown. (Also have various other conventional cooling methods like fans, etc, but they take longer to work.)
Image features a head cap product for relief and comfort, branded "myhalos" - many other brands of these exist. It highlights four key benefits: increased head coverage, more gel for longer cooling, increased light blocking, and a comfortable nose section. The cap looks like a smooth beanie hat, but much longer and with a curved edge that goes over the nose. It is hard to see in the photo but it has a hole in the top (by design). Some do not have this hole and instead have gel all round the head.
This scheme could in theory be useful for some people with #MEcfs who for example need to take rest which lowers their productivity per hour and other things that might lower their productivity. We’re not sure if many people with ME in Ireland actually avail of it.
🧵
From Blanchardstown Centre for Independent Living on X
🎙 On #DisabilityMatters, Mary Tynan shares how ME & access barriers shape her life — and art, talks about her new film Nadirshah.
📻 Thurs 4PM | 5 Jun on @925PhoenixFM
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“Though the Association runs on limited resources, Mary describes the ME community in Ireland as “very kind and welcoming.” She recommends the ME Ireland website https://irishmecfs.org/blog to anyone affected by the condition.”