silky
a gentle soul here to learn
- Messages
- 95
- Location
- Orange County, California
Welcome to Phoenix Rising!
Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
To become a member, simply click the Register button at the top right.
Do you have a link? I find the study good?!ther thread
@Research 1st do you think there's anything to this study or are they just getting the CFS people?
I was really excited when I read it but now I'm realizing what you said on the other thread means that they're probably wrong
I was really excited when I read it but now I'm realizing what you said on the other thread means that they're probably wrong
@Research 1st do you think there's anything to this study or are they just getting the CFS people?
According to google a US city block is at least 200m, 2 blocks would therefore meet or exceed 400m. In the UK being able to walk even 1 block would mean, to the company that awards our disability benefits, that we have officially NO issues with mobility
Please, lets not start judging whether other people are 'ill enough'.
It also implicitly assumes that 'not ill enough' can't progress to 'ill enough', while being the same disease.
What the law says and how it is applied in practice are two entirely different things, and not all of us have the energy, the resources, the capability or the help to overcome this.If you are able to do the above repeatably (as often as reasonably required), reliably, safely, on most days. (is the actual law)
What the law says and how it is applied in practice are two entirely different things, and not all of us have the energy, the resources, the capability or the help to overcome this.
So don't quote the law back at me.
I think walking distance is not a great measure of ME disability. A 2-day CPET is a much better measure - and it's a test that Social Security will accept as objective evidence of disability. Based mainly on my (terrible) 2-day CPET score, Social Security approved disability insurance for me in 2015. For that, I am very grateful. Thank g*d we still have a safety net in the U.S. (For now.)According to google a US city block is at least 200m, 2 blocks would therefore meet or exceed 400m. In the UK being able to walk even 1 block would mean, to the company that awards our disability benefits, that we have officially NO issues with mobility (i.e. walking). In practice only being able to walk 50m (1/4 of a block) still doesn't give people an award for mobility in the UK
So, some people, if people is the right term, would consider that being able to walk 400m is definitely not ill enough.
I understood the law, I filled in the form correctly, I used the appropriate language and supplied relevant additional information in the form of 30+ pages of detailed answers breaking down what I could do, how often, what the effects were, what I couldn't do etc. etc., with statements from others, documents from my local council etc. I then went to (was driven to and assisted with) a PIP assessment and again gave them information in response to the questions asked. The paramedic who assessed me had no understanding of asperger's or M.E. and, on the basis of an "observational mental state exam" gave me zero points in all categories apart from how far i could walk, giving me 4 points for 50-200m when it had been clearly stated that I couldn't walk more than 30m at a time before having to stop due to the level of pain and disorientation, using crutches, and couldn't do this repeatedly, safely or reliably without being escorted etc. etc - IMO I suspect she was in a hurry when completing the medical program and fully intended to give me zero points but mis clicked, the 4 points being the next box down.If you don't understand the law when filling in the PIP form, then you will not fill it in correctly.
If you fill it in incorrectly, then you have no clear documentary record to criticise a most basic flaw in the assessment.
In other words, if you can't walk a distance, most of the time at over half the speed of a normal person, you may be legally unable to do it, and should tick 'no' against that distance, and then explain why.
The same (for PIP) is the case for all of the activities. This does not mean that all assessments are correct, but at least you're not starting from behind as if the form was incorrect, and you answer it according to the distances you can do once on a good day, say.
Getting back to the NIH study, does anyone know when any results might be revealed
They need to finish getting samples from all 40 patients before doing some of the high-tech stuff. For instance, they'll be looking at thousands of proteins in spinal fluid. They'll do this with pooled samples - all the patients in one pool; all the controls in the other. Then they look for differences. So that kind of work will wait until they get everyone. Not sure how long that will take. I think they've had about 10 patients and some controls in so far.
Distinct Cerebrospinal Fluid Proteomes Differentiate Post-Treatment Lyme Disease from Chronic Fatigue Syndrome
http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0017287