The Big Fishing Expedition: Report From the NIH Intramural Study on ME/CFS

[silky]

!!!!!!

http://simmaronresearch.com/2017/07...eport-from-the-nih-intramural-study-on-mecfs/

 

[silky]

@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

 

[Seven7]

ther thread

Do you have a link? I find the study good?!

 

[silky]

http://forums.phoenixrising.me/inde...-illness-than-other-serious-conditions.53044/

 

[trishrhymes]

@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

Please be careful about believing theories put up by individuals here on PR. People are free to express opinions, but that doesn't make them necessarily correct.

I think the NIH big study sounds very promising - they are right, I think, to restrict this in-depth study of a small number of patients to a narrow diagnostic band (infectious onset, less than 5 years duration etc) in order to try to get homogeneity in the sample so there is a better chance of finding useful information.

They are doing an amazing array of tests which should help narrow down what is going on in these patients. If for example they find a particular pattern of metabolites or immune cells in this subgroup, it can then be tested on the wider ME community to see whether it applies more generally and provide a basis for further research.

 

[Philipp]

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

As far as I understand it this is not necessarily a matter of 'them getting it right or wrong' and more a matter of 'how applicable is anything they find to pwME in general'. This is very much a basic epistemiological problem (or however you want to put it) in that you will only be able to tell what the problem you are trying to solve was after you have solved it. We cannot tell beforehand how relevant whatever the NIH study finds will be to us because we do not know what they will find, how much different severity groups differ on a (patho-)physiological level, how many different illnesses (defined by different etiologies) we are actually talking about that happen do produce overlapping or very similiar looking symptoms and so on.

What Research 1st touched on, assuming I understood his post correctly, is that it is essentially impossible right now to establish exactly what is wrong with the people being studied. As long as we do not know the cause of ME and cannot test for it we can, by definition, not be certain that someone who is being studied has 'ME'. You can only study people who e.g. have POTS or PEM (i.e. symptoms) in common, and even then you do not know if their respective causes of POTS and PEM are the same for everyone examined. It is very possible that the type of ME/CFS that causes people to be bedbound is very different from what those people who can come to the NIH facilities have, but we will only know that after doing research.

But the thing is, you gotta start somewhere and then keep on hacking away at the problem until you have found something you can use and then build on that. Every wrong turn you take on this journey means you have successfully found another way that did not work.

 

[A.B.]

@Research 1st do you think there's anything to this study or are they just getting the CFS people?

@viggster has difficulties walking more than two blocks and that's not ill enough for some people? That's crazy.

 

[Wonko]

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.

 

[RogerBlack]

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

If you are able to do the above repeatably (as often as reasonably required), reliably, safely, on most days. (is the actual law)

 

[trishrhymes]

Please, lets not start judging whether other people are 'ill enough'. We cannot and do not know other people's medical details. I find this judging distasteful. What qualifies us in the UK for disability benefits is not a measure of whether we have ME or not. Struggling to walk 2 blocks could put someone quite low on the SF36 physical functioning scale, depending what else they can't do or struggle with.

 

[RogerBlack]

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.
Shortly after I was diagnosed (teens), during my first recovery, I was able to do perhaps 8 hours a day of normal activity, I just got abnormally tired (for a 12yo).
This progressed through trying to do too much (football practice, which I enjoyed), through to in my teens having ~6 hours a day of normal activity, which progressed...

I'm now down to the equivalent of perhaps 15 minutes, optimistically, on good days.

Without good clinical evidence (and there is none) that there is such a thing as full recovery, I would hesitate to call anyone recovered, or say they don't need studied.

The 'ME/CFS' name thing - 'only ME patients have ...' is highly misleading. For ~20 years in most places, CFS is the diagnosis most patients presenting with symptoms that would earlier have gotten (if lucky) a diagnosis of ME gets.
There is simply no way in the UK to generally get a diagnosis of 'ME'.
Studying subgroups may be valuable, but this doesn't mean those outside the subgroups are at no risk of severe disease down the road.

 

[trishrhymes]

It also implicitly assumes that 'not ill enough' can't progress to 'ill enough', while being the same disease.

That was very much in my mind too, @RogerBlack . I spent over a decade when I was first ill pushing myself to continue teaching part time and raising a family, going to bed every night in a lot of pain and barely able to move from exhaustion and dragging myself back to work the next day.

Eventually I had to retire as my ME gradually worsened over that time from mild to moderate with patches of severe relapses and sick leave. People whose ME was severe from the start may well have judged me then as 'not ill enough' to have real ME.

Now, 13 years on from retirement I'm forced to spend 95% of my day in bed and need to pay helpers for showering, cooking, cleaning etc. When I do light standing activity like pottering in the kitchen for more than 2 to 3 minutes to sort out a meal, I start feeling light headed and my pulse rises above my calculated maximum.

My ME symptoms are the same as they were at the start, but a whole lot worse and much more disabling. It's the same illness.

 

[Wonko]

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.

 

[RogerBlack]

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.

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.

 

[viggster]

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 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.)

 

[Wonko]

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.

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.

Obviously I obtained a copy of this report, the assessor appears to have deliberately lied, given incomplete information, completely omitted relevant information she was told etc. Several tests mentioned did not occur, other tests which did occur that would indicate significant issues were not mentioned. She appears to have deliberately set out to give the DWP decision maker the impression I was lying, and by a series of misdirections throughout the report apparently succeeded.

The DWP ignored my medical evidence, my PIP2 form, my supplementary evidence, everything, apart from the PIP assessment report, completed by someone who had clearly been well trained to minimise the impact of disability.

So....anything more to say about my alleged incompetence in dealing with a perfectly fair and well balanced system or are you prepared to accept that the actual implementation doesn't match the law, and based on my experience and the experiences of thousands of others is designed to not match the law, is deliberately designed to be unfair.

edit...BTW I have submitted a MR request, comprising a 24 page document, which both points out the flaws in the assessment report and restates why I think I should be entitled to points in each category. This has a 13% chance of succeeding (at all, no idea what the stats are for getting the correct award), and when it fails I will attempt to prepare an additional submission for appeal - which has on average a 62% chance of succeeding (again I have no idea how this breaks down re oral vs paper hearing). End result is likely to be I win, but after having had a considerable amount of stress, being much more ill than I needed to be for months, putting several other people to serious inconvenience, and the loss of 60% of my income for several months (with the loss of DLA I also lose severe disability premium - in total a loss of just under £140 a week - yes I "may" get it back, eventually, but how do I live in the meantime?) All of this because PIP assessors are trained to minimise disability and DWP decision makers generally just follow exactly what the assessment report says.

 

[trishrhymes]

I'm not sure how a thread about the NIH study turned into one about British disability benefits. @Wonko I am sorry to hear of your dreadful treatment with your PIP application. It seems to be an all too common experience with ME sufferers not being believed. @viggster I agree walking distance is not a good measure of ME disability. 2day CPET is clearly much better, but not available or recognised in the UK, and no use to the more severely effected who would not be well enough to do it.

Getting back to the NIH study, does anyone know when any results might be revealed?

 

[viggster]

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.

 

[Forbin]

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.

This sounds like an effort to replicate the Natelson/Schutzer spinal fluid study of 2011:

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

That study had a like number of CFS patients (43), but only 11 controls. It also cross-compared with Lyme patients. It was a first step in an attempt to identify spinal fluid proteins unique to ME/CFS patients, and the pooled results identified hundreds of potential candidates. Dr. Natelson was lobbying hard to get further funding, but I don't know what became of all that.

The technology in this field seemed to be rapidly advancing, so 7+ years later it might be a more feasible (and less arduous) undertaking.

 

[Skippa]

Hey @Wonko don't sweat it, the tests and testers are extremely unfair and biased and it doesn't matter what/how you answer the questions, they wilfully ignore what you write (much of the time - some folks get lucky) and fulfil their own narrative.

I had the "legal angle" covered, loads of PR folks sent me help and advice, mea guides, alsorts... filled,it out, repeatedly and reliably was my mantra, hahahaha how can they ever ignore my plight I've got them now...

Nil point.