Search results

Can I just say.. There’s already been a lot of going around in circles on this thread. People getting offended by what Jonathan has said, and then Jonathan re-explaining and reiterating his thoughts again. I think if you read back a few pages it might help.

Update.. induced hyperthermia.. le sigh..

She’s the one offering apherisis to desperate long Covid patients..

I posted in the “In Memory of” section about a very severe patient that died following multiple surgeries and a complication of surgery called arachnoiditis. The family seem insistent in their report of the persons death that the multiple surgeries were not to blame and were actually successful...

XAI Co-Founder Yang Leaves Musk’s Startup After Lyme Diagnosis

EUGH. Says it all. Disgusting.

If I were you I would do it with in your constraints for PEM, so no running. I don’t think they are asking you to go as fast as possible. I would go as far as possible within your known limitations for PEM. Eg. For me I can walk 6 mins on flat but it becomes harder after 4 to 5 mins and I must...

No, it’s not different people. The majority of patients I’ve ever spoken to on Twitter or Reddit believe this stuff is legitimate. it’s because people are embarrassed to say they have ME or CFS or ME/CFS. They want to add a bunch of what they perceive to be more legitimate sounding labels to...

You have an immunologist prepared to treat you right now with daratumumab? Curious what country you are in?

YES — hugely for me. My voice is weak and it requires a lot of effort — I run out of breath especially if I have to speak more than one sentence concurrently. Facial weakness resulting in a mask like effect that comes on during social visits is also a problem. Especially meeting new people I...

Omg.. any skin care obsessed woman could tell you how damaging this would be. Tretinoin is an extremely potent prescription only form of retinol. It should never ever be applied to mucosal linings as delicate as in your nostrils. It can cause chapping just of your regular skin. This is easily...

Odd too because they attributed his previous improvement to Abilify. So it would be an obvious hypothesis that he is on an upward trend over time recently, and this is unrelated to either treatment.

This is exciting.. Will they use the DecodeME dataset, or gather new patient samples or how does it work?

A top cervical spine surgeon in Ireland reviewed my cervical spine images and said they were totally normal. I had been offered a full cervical spine fusion by Gilete and diagnosed CCI, AAI etc etc. The Irish spine guy was almost sputtering with anger describing Gilette’s practices because he...

Appears to be the same two people he and Janet referenced over a year ago. There don’t seem to be many more positive stories coming out about jak-stat drugs..

There is a Reddit for SFN which is helpful to see the symptom picture. I had wondered if I had it bc I have burning / itching on arms, cold feet, dysautonomia and the rest of ME/CFS. But after reading the Reddit I felt I didn’t have it — their symptom profile is different and can be quite...

Its not rigorous bc the criteria these surgeons use is not standard. Mainstream top spinal surgeons look at the same imaging and say this is a healthy, normal spinal structure not requiring surgery. This is in my personal experience. I have been offered surgery by Gilete — at the time he was...

This thread is about the importance of advocacy being accurate and not misleading or sharing misinformation. The problems with ICC are well documented on this forum and mentioned in this thread. It is entirely unhelpful to say ICC is a subset of ME/CFS and to work with the Irish govt on that...

@MinIreland Since you’re in Ireland you may have come across a loosely organized group called MEAI — ME Advocates Ireland which I think is really one or two people. Most of what they put out is inaccurate, unhelpful and harping on about ICC ME. They are as far as I know the main advocates...