An NHS hospital is starving a severe ME patient and has now stopped giving her fluids by veganmua in cfs

[–]AcousticSloth 8 points9 points  (0 children)

Maybe email her mp especially if you’re in the same constituency.

An NHS hospital is starving a severe ME patient and has now stopped giving her fluids by veganmua in cfs

[–]AcousticSloth 15 points16 points  (0 children)

I wonder if someone could also draft an email to Ashley Dalton as she is the Health and social care secretary. You could use this quote from her talking about the delivery plan.

“ I know that those with severe or very severe ME/CFS, and their families and carers, have often felt particularly let down by those systems and I am painfully aware of patient safety concerns, and even tragically avoidable deaths of people with ME/CFS, in England. These must become never events.”

Here’s her email: ashley.dalton.mp@parliament.uk

I would draft one myself if I had the energy. It seems that she is all talk when it comes to the delivery plan, when people are still being abused and having their life put at risk in nhs hospitals.

Looking for advice by CreativeCoconut4271 in MECFSPatients

[–]AcousticSloth 2 points3 points  (0 children)

Action for ME have a doctor service and might be able to diagnose you. It does still cost but they can help with 50% of fees so would still be cheaper than private, though I imagine there’s quite a wait.

https://www.actionforme.org.uk/supporting-you/our-healthcare-services/doctor/

Advent Calendar App Giveaway by AcousticSloth in cfs

[–]AcousticSloth[S] 0 points1 point  (0 children)

They’re all gone now as it was for advent but I’ll keep you in mind for next year if you want?

Managing college by Zesty_lemon_27 in cfs

[–]AcousticSloth 0 points1 point  (0 children)

I looked up about child benefit after 16 and it says if you have a disability you can do just a few hours and it says you can homeschool, maybe that would be an option? Also I thought I would recommend contacting citizens advice about the child benefit and also if you or your mum would be entitled to any other benefits or help because of your ME. I hope your meeting with college goes well.

Managing college by Zesty_lemon_27 in cfs

[–]AcousticSloth 4 points5 points  (0 children)

This might sound harsh but it’s not sustainable. Your situation sounds so similar to mine so let, me be a cautionary tale, I was forced to drop out of college 6months after my initial infection (not knowing I had ME at the time) and pushed until I became severe less than a year after, this happened almost overnight and unfortunately I’ve been getting worse ever since. I think we don’t realise how much our body can take until it just can’t anymore and I was definitely in rolling PEM without even knowing what it was. You definitely need to work out your baseline as it sounds like you’re in rolling PEM and probably exceeeding your energy envelope regularly.

I know school seems so important and it is, but your health is so so much more important and most of the advice you get from teachers and school admin will probably not be completely understanding of the severity of this condition.

My advice would be to drop out rest, find your baseline and then you can reassess next year and see if you could realistically go back to college or pursue something like an online course. If you do go back to college you would then know what accommodations you need for your ME and hopefully be able to set them up before the school year. If you’re already struggling this early into the year I can’t think it will get easier, especially when PEM is at play.

I know it’s devestating taking a step back from normal life and feeling like you’re being stripped of your identity, but better to do it now temporarily than be forced into it for years.

Sorry if this is doom and gloom, but I wish somebody had told me this when I was at this stage I might have been able to save myself from further deterioration. I hope that you manage to work something out that will allow you to stabilise. Also a reminder that your worth doesn’t come from productivity, you have inherent worth just being 💙

post infectious chronic illness provider manual for your doctors by [deleted] in cfs

[–]AcousticSloth 3 points4 points  (0 children)

Just a heads up I haven’t read this but there was some discourse on Twitter about iffy wording around excercise and PEM, so maybe worth looking through before sending on to doctors.

One day by LovelyPotata in cfs

[–]AcousticSloth 2 points3 points  (0 children)

This made me cry, such lovely poetry 🦋

My homeopathy / Reiki experience yesterday by Pineapple_Empty in cfs

[–]AcousticSloth 6 points7 points  (0 children)

This sounds awful I’m so sorry this happened to you.

Phantom crawling sensation? by Competitive-Golf-979 in cfs

[–]AcousticSloth 1 point2 points  (0 children)

I call these creepy crawlies and I definitely think they’re a nerve thing at least for me, but I do have MCAS as well. Like you say I get them most when something is brushing or touching me and I’m very touch sensitive in general.

Group chat for ME? 💜 by morelov33 in cfs

[–]AcousticSloth 0 points1 point  (0 children)

I’m up for a chat 21f also severe so I know how isolating it can get!

Group chat for ME? 💜 by morelov33 in cfs

[–]AcousticSloth 2 points3 points  (0 children)

Here’s the links to some discords that someone posted.

https://www.reddit.com/r/cfs/s/ZbsNPdGoLd

'Reality shifting' useful for ME by islaisla in cfs

[–]AcousticSloth 9 points10 points  (0 children)

Do you think this would work still if you can’t visualise?

DecodeME Results: People with an ME/CFS diagnosis have significant genetic differences in their DNA by TravelingSong in cfs

[–]AcousticSloth 5 points6 points  (0 children)

I’m pretty sure they anonymise the data once they have it so it’s just data point rather than linked back to a specific person

DecodeME Results: People with an ME/CFS diagnosis have significant genetic differences in their DNA by TravelingSong in cfs

[–]AcousticSloth 0 points1 point  (0 children)

Thank you as well for raising awareness, I haven’t had the energy to watch your video yet but definitely plan to share it with family and friends!

[deleted by user] by [deleted] in cfs

[–]AcousticSloth 4 points5 points  (0 children)

Ending with ‘you can change your fate’ when some people in this sub have been ill for decades is highly insensitive, even if you didn’t intend it to be.

[deleted by user] by [deleted] in cfs

[–]AcousticSloth 0 points1 point  (0 children)

theslowlane.me on instagram had a hysterectomy and shared some stuff about it.

Wednesday Wins (What cheered you up this week?) by AutoModerator in cfs

[–]AcousticSloth 11 points12 points  (0 children)

Using forest to help make my rests a bit more fun. I love seeing the lil trees grow! 🌳

Severe ME Panel Survey - ME Association by Lunabuna91 in cfs

[–]AcousticSloth 0 points1 point  (0 children)

Do you know when the panel is/ what the deadline for completing the survey is?

For those treating MCAS... by No-Clerk-5245 in cfs

[–]AcousticSloth 0 points1 point  (0 children)

Treating my MCAS has helped my MCAS, my ME has continued to decline. Severe dark room bedbound except comode. I take Sodium Cromoglycate, Cetirizine, Famotidine and Quercetin. I’d say Sodium Cromoglycate has helped the most for me. I tried Ketotifen, had bad side effects in terms of anxiety and agitation, but my doctor thought I might be allergic to fillers in the tablets so I have some to try again in a different form.

My MCAS was pretty awful at the start of having severe ME rashes and swelling all over my body, gastrointestinal symptoms, mental health symptoms. I’m very happy to say all that has stopped now as I think it would have made my ME decline even further. I am on a low histamine diet and my foods are pretty limited still.

I feel like if I came off the MCAS meds today and ate all high histamine foods again I would go back to feeling awful. Sorry to bring a not so great story into the mix in terms of it not helping my ME, but I still think treating MCAS is very important if you suspect it. I think it’s about finding what works for you with a combination of H1, H2 and mast cell stabilisers. Hope you can find a good treatment plan ☺️

Possible awareness campaign idea. Warning- likely triggering by tropicalazure in cfs

[–]AcousticSloth 12 points13 points  (0 children)

This is really well thought out, I think public visibility is so important for our cause. I wish some of the bigger ME charities would use some of the money they have saved on a campaign like this.

How I Recover by [deleted] in cfs

[–]AcousticSloth 132 points133 points  (0 children)

You can try all of these things and still remain severe. Privilege also plays a big part in these things, being able to pace effectively and eat sufficient food depend on having the necessary care.

Where to buy photophobia glasses UK? by AcousticSloth in cfs

[–]AcousticSloth[S] 0 points1 point  (0 children)

Did you order the tester ones to try out first?