Researching research in USA

[1gooddog]

After reading about ongoing research in Europe, I started wondering what was being done in US. I have read about Stanford research and a Dr. Phair.

I found this site which dates to 2017:
https://www.nih.gov/news-events/new...alomyelitis-chronic-fatigue-syndrome-research

NIH and CDC members applying and approved for research. What concerns me is:

1) are they corroborating with other research and not duplicating? and
2) the groups involved. (Drug abuse, alcohol abuse, and naturally the Psyches trying to claim it again, and again, and again.)

I get the feeling when a large chunk of money is put forward for research, many groups manipulate a plan in an effort solely to get money. I fear skewed and manipulated results, as happened with the Dutch, in order to receive more money. It is akin to receiving money under the table.

I personally have not abused alcohol and have never used recreational drugs, not even a joint. Ever.

I know this isn't about me. And maybe they are pursuing all avenues. But it still makes me go Hmmm? Things that go bump in the night sort of feeling.

I am excited about genetic and auto immune research.

 

[Snowdrop]

Well, there's this: http://forums.phoenixrising.me/index.php?forums/latest-me-cfs-research.15/

and
https://www.s4me.info/threads/news-in-brief-march-2018.2754/
https://www.s4me.info/forums/science-library-read-only.67/

Not sure if that helps.

 

[1gooddog]

@Snowdrop Thank you very much for the info.

Hospitals and clinics accept pain is present. Yet there is no instrument. A patient assigns a number, 1 to 10. A 3 for one can be a 7 for another. I have often said 12 or 15. But it seems to be acceptable.

Fatigue can also be arbitrary. From one person to the next, and one hour to another. There are days I collapse from chewing, but not every day. Fatigue is always present in some degree or another, any given day or hour. And it is easily exacerbated as we all know.

Putting the emphasis on fatigue, as in Chronic Fatigue Syndrome, was the worst idea ever. Finally that is being admitted.

But whatever degree on any day or hour, until they come up with an instrument and expensive testing not covered by any insurance because there is as of yet, no code, - they will never accept it.

Personally, I do know what I don't have which relates to fatigue or heart as I have had multiple testing for everything they could test. As I am certain most have. We all know this "fatigue" is different. We have all had post exercise fatigue which quickly rectifies itself.

I consider the medical community is made up of pill pushers wearing blinders. I discovered this at the Mayo clinic. Psychiatrists need to be the first group taken down.

 

[Snowdrop]

Putting the emphasis on fatigue, as in Chronic Fatigue Syndrome, was the worst idea ever. Finally that is being admitted.

One thing that people who get sick with this illness realise very early on is as you mentioned -- this is no ordinary fatigue. It might interest you to know that when first identified this illness was called ME. Changing the name was a political move. Somewhere in the depths of the many threads here there is the letter that went between Stephen Strauss (then of the CDC I think) and Keiji Fukuda (If I recall correctly) suggesting that calling it cfs would better serve their purpose. See here: http://forums.phoenixrising.me/inde...-of-their-view-of-the-iom-report.36380/page-3

There are people here and elsewhere who have a very good knowledge of this history.

Right now we are at the end and a beginning. There are people who have been ill for decades that have been trying to get the medical communities (variously around the world) to acknowledge ME/cfs as more than psychological. They have worked hard on behalf of all of us fighting for better recognition of and treatment for this illness. Only in the past two years or so has there been any real hope of a change in the narrative.

Presently there are several science research groups working on our behalf to find a treatment and ultimately a cure.

You may already be aware of Open Medicine Foundation as they have posted here.

There are also,

https://www.mailman.columbia.edu/pu...fatigue-syndrome-linked-imbalanced-microbiome

https://www.jax.org/news-and-insights/2017/september/new-chronic-fatigue-center-grant

http://cureme.lshtm.ac.uk/

http://hansonlab.org/research/cfs_me/mitochondria/

https://www.griffith.edu.au/menzies...ditions/neuroimmunology-and-emerging-diseases

I'm sure I missed some but this gives you some idea. There was some research before but not on this scale.

Things have mostly changed due to patient led advocacy by sick people who have given a lot. And then there's David Tuller. The man deserves this communities respect as he has been tireless in pursuit of dismantling the destructive psychosocial narrative.

Sadly, all this is coming about as the death toll in this community is rising.

 

[1gooddog]

I do realize this. I am constantly researching and reading. I understand the ME, but felt it mostly coming from Europe. What I hsvendiscivered own that very few in the sus are even aware if CFS, let alone ME. I have spoken with med orofessionaksbwho have never heard of CFS, let alone ever confronted it.

I know people and advocates have worked tirelessly and people are dying. I am 70 and all I have is my faith as instill find denial here.

For a few years MS was suspected in my case. I worked with MS groups. Until the advent of ct s and MRI s it was denied. They still have a strong org and govt spikes people.

I have researched epidemics and how then people were treated. Incline village for one. Our sec denied it and didn' even eork with patients. Two doctors she were victims are now researching. I have seen this called a psycho disease of menopausal women.

The bone I have to pick is with my own govt. They gave it the title of CFS. Only recently have they referred to ME/cfs..

The recent history of my own govt revolves around lobbyists for big Parma with deep pockets. Do you know the monthly cost of MS treatments.
I do not mean to offend anyone, I know so many have been guinea pigs, so many are worse off than I. Up until recently I have been R and R . I am impressed by current research. I only know what I have some up against.

 

[Snowdrop]

Hi @1gooddog

Sorry I hadn't read any of your other posts so was not sure what knowledge you did already have.

Getting older with this disease is brutal. I'm getting rather tired at the moment (I'm in Toronto) so will leave you with I hope that we all see better days ahead.

 

[1gooddog]

Hi @1gooddog

Sorry I hadn't read any of your other posts so was not sure what knowledge you did already have.

Getting older with this disease is brutal. I'm getting rather tired at the moment (I'm in Toronto) so will leave you with I hope that we all see better days ahead.

 

[1gooddog]

You are too kind. I am trying to make amends.

I do become passionate and and totally involved when I just need to calm down.

I think I am going to take a break from all of this. Family not understanding, not even wanting to. Haven't we all heard that.

Have a restful night and gr8 day tomorrow.

Evenings are the worst.