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Merged thread I am really worried about the new proposed changes to PIP. I have a big worry that even if an election is close, that these changes will still go through with a new govt. After all, the opposition party have also in recent months said “there is no option of a life on benefits” and...

I had a colonoscopy, endoscopy and endoscopic ultrasound under general anaesthetic (privately, but at an NHS hospital). So it definitely can be done.. and I definitely know that hospitals often run lists specifically for patients who need general anaesthetic and can’t tolerate the procedures...

I haven’t had any amazing results. It’s helped my cluster headache a little - maybe 15 to 20%, so far no improvement in migraine, or in any other symptoms. I don’t do it frequently enough though, and sometimes even skip days - because the vagus nerve stimulation device is causing me pain! You’re...

I just got the Autumn booster - which was the “new” Pfizer vaccine (U.K.) - does anyone know, is this the updated one that covers the variants that are currently in circulation?

“Under his plans, currently out for consultation, the Department for Work and Pensions (DWP) would no longer take any account of whether a disabled person has a mobility impairment when deciding if they were fit for work through a work capability assessment (WCA). Ministers also want to remove...

All of these are the same for me (except the higher education/job experience which I was able to experience 3-4 years of). I’m in a relationship which pre-dated my illness and so my situation is slightly different, but my illness is very severe, and still my boyfriend chose to still stay with...

They don’t say what they mean by more doses.. I’m guessing they give the dose as normal this Autumn, but then give another booster dose in Spring? As I’ve not heard of them giving a double dose in one go (and would also be worried about receiving that!)

I was going to get my covid vaccination next week - but I realised I’m currently on a high dose of steroids and so severely immunosuppressed and my body won’t make enough antibodies. I think I’ll still be on the steroids for the next 3 months. I don’t want to delay my vaccine by that long...

Oh I also have the Flare Calmer earplugs and I’m not convinced that it does much (for me at least). It definitely doesn’t reduce noise like Quiet-on, Loop quiet or Bose. I can still talk normally and hold a conversation and can hear meowing in another room, can hear the washing machine just as...

Loop Quiet vs Quiet-on Vs Bose: I tested the Quiet-On earplugs last night (the noise cancelling in ear-buds that you can sleep in), they helped me fall asleep as they drowned out some noise from outside my room that was going on. However, I’m also testing the Loop earplugs (the “quiet” version)...

I echo @JemPD - I found noise cancelling, in particular Bose noise cancelling (I have the Bose noise cancelling in-ear earbuds but some people prefer the Bose nose cancelling headphones) to definitely be the best for those kinds of sounds. It’s really good for repetitive sounds that come from...

Yes, mine is computerised/digital too. It’s the first digital machine we’ve had and my mum much prefers it to the old non-digital sewing machines she had as she struggles with the pedal too. The one I got is the Singer Patchwork and Quilting Sewing Machine 7285Q. It has a slow speed - I put it...

I don’t lie down, my bed is a hospital/profiling bed so it can be put in any angle! I’m usually at a 60 degree angle I think! It makes a huge difference as I’m not usually able to sit upright fully for long without becoming too unwell.

I re-started sewing a few days ago too! We recently got a sewing machine with a Stop-start button, which means I can sew in bed without having to use my feet! It just sews automatically once the button is on! It’s amazing and it has so many different stitches. It’s going to take me months (and...

Do you know which modifications to her diet have helped? I’ve been diagnosed with microscopic colitis, and from what I’ve read collagenous colitis is a type of microscopic colitis. I’ve only been given steroids and no other info about what foods/diet could help? To answer the opening question...

Absolutely, there is no reason whatsoever for the trust to deny her these lifesaving accommodations. It is wilful ignorance and cruelty. All hospitals (as far as I’ve been to), have side rooms available for special cases - infections, or other people who would have extreme distress if put on...

Oh no, this is so sad! :( He was so lovely, understanding and kind and really smart. That’s probably why they recently changed my usual doctor from Prof Lobo to another person in his team. I was going to ask to change back to Prof Lobo but it looks like I can’t now!

He is the kindest and most approachable doctor I’ve ever met. One of my other friends (also a complex patient with other conditions), said the same thing about him, that he’s the nicest doctor she has ever met! He will rule out endocrinological issues. He believes complex patients and listens...

In my experience Dr Gall (and Prof Lobo, who he works with) are some of the nicest doctors when it comes to ME & LC. They do believe in your symptoms. Sometimes I think they may have difficulty understanding the severity of severe ME symptoms though, but generally, extremely nice doctors. Also...

Yeah, have seen two of them, will PM you soon.