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It’s been a while since I read the Dubbo studies but from memory the patients were followed from the time of diagnosis of the original illness. I don’t think there was any delay in assessing illness severity.

:banghead::banghead::banghead: :thumbup:

What I see is an adult tricking a child by applying less pressure on the “magic glove” and thus gaining their trust in the process.

I don’t think we know what the mechanism is for shortness of breath in PWME. I do know that for me it isn’t related to doing more than my fitness allows because it is too variable day to day. A healthy person’s level of fitness dictates relatively consistently what activity they are able to do...

All of you expressing your best wishes for his continued recovery are much more accommodating than me. I feel like we’ve just been thrown under the bus again and facing a huge set back that I no longer have the stamina to face. I have no sympathy left for ignorant and harmful professionals who...

To be fair they don’t expect people to pull a single line from their chart. When you look at the entire chart the chromosome is listed for the first snp on each relevant chromosome. All subsequent snps on the same chromosome are listed on subsequent lines without repeating the chromosome number...

Look up forward and reverse orientation for a better explanation than I can come up with. The snp database used to report snps in whatever orientation researchers reported them so it wasn’t consistent throughout. Some companies like 23andme reported all snps in forward orientation and the...

I’m not sure what you’re thinking is a mistake. Do you mean C>T being written as G>A? This most likely is not a mistake, but simply that one group is reporting using the forward strand (+) and the other using the reverse (-) When comparing your results you always have to look at which way it is...

The 2 weeks quarantine is for those who are contacts of those infected not for those who test positive to the virus. If a contact tests negative and doesn’t become sick within 14 days after contact they are presumed not infected.

It’s an autoimmune illness. Symptoms can flare and settle but the illness is permanent. My father had it. It’s worth getting it ruled out as there is some overlap in symptoms with ME/CFS. my guess though is the doctor just thought of it as a possibility when you mentioned breathing weakness.

I don’t think so. Previously they’ve been saying there are functional changes but no structural changes in FND

Chicken Pox as an adult has been implicated as the beginning for several patients.

Curiosity mainly for me. My husband was interested some time ago to understand what tinnitus sounds like for me. I couldn’t find anything online that came close to what I hear and didn’t bother with it again. I hear multiple sounds that are different in each ear. Sometimes a new sound is added...

Thanks @Sly Saint Sounds are closest to 1, 2, 3, 4 and 7 for me. Plus other sounds that weren’t on the video. Different sounds in each ear. I’ve tried matching them before but it’s really hard to pull one sound out of the mix.

I think a TTT would only be useful if done by someone who understands it’s use in our condition. If done by someone who only knows it’s usefulness for syncope, you end up with a “normal” result if you don’t pass out even though you may have lots of other symptoms or abnormal physiological...

My mother spent 2 months inpatient in a rehab hospital where she had daily physio, exercises and learning to walk again with a wheely walker. She also had to relearn how to feed and dress herself. Some hand exercises were done with a mirror which tricks the brain into thinking it is the other...

It will be good to follow up on. My understanding is that treatment for stroke is only necessary at the acute stage to limit damage. I’m not sure that a stroke which was mild enough to not be diagnosed at the time it happened would have benefited from any treatment. Any underlying issues that...

That could hardly be called randomised then surely? Often patients pull out of studies if they don’t get the group they were hoping to be randomised to, but I’ve not heard of patients being shifted from one group to another before.

I can’t answer your poll. There is no option for chronic, always there, tinnitus. I’ve had it since my teens which was several years before ME/CFS. The severity fluctuates with a migraine or a cold but is otherwise unconnected with other symptoms.

@Simone