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NIH wants your views on what to research and research strategies

Sean

Senior Member
Messages
7,378
1. Follow up on the 1993 water metabolism study by Behan et al. (I thought there were more of these, but can only find one.)

2. More detailed movement studies (balance, gait, fine motor control and neuro-sensory-motor integration, etc).

3. Whatever studies are done they need to use 2 day repeat testing (test one day, then give patients an exercise challenge, then test again the next day). Where applicable and possible, of course.
 

Vasha

Senior Member
Messages
119
All of these ideas are important--autopsy studies, verifying the CPET testing, etc. I agree!

@Sean, that is fascinating. Dr. Kaufman tests for arginine vasopressin and finds it is nonexistent in many of us.

To these I would add (dreaming big I know):
-Prospective, longitudinal epidemiological studies. I.e., update the Dubbo studies and expand them. Surveil patients with EBV, late-age chicken pox, Coxsackie, etc. (pick a few usual suspects) as well as Ebola, Zika, West Nile, tick borne illnesses. Follow patients for at least one year and see what happens. Compare.

If we can see the development of the disease (and how often it might have an infectious insult as a trigger), we can learn a lot about where to go from there.

Also, this might be something that could piggyback on existing work that (I hope!) is happening with Zika, Ebola, etc.

-Vasha
 
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Vasha

Senior Member
Messages
119
2) We should join forces with Dr Grubb on OI. There are effective treatments that can get people out of bed immediately. Long out there drugs that work today (when the prescriber knows what it is doing). So see if betablockers(case by case), Calcium Channel Blockers (case by case), Vassoconstrictors (case by case), Vassodilators (case by case)......... This is cheap, fast and effective treatment we can have studies up and running fast and with good immediate results (per soubgroup).

4) Try MS and RA drugs for CFS.

Very much yes! Help with symptoms while the basics are being sorted out. Getting good treatment for OI is so important to QOL.

-Vasha
 

Sean

Senior Member
Messages
7,378
@Sean, that is fascinating. Dr. Kaufman tests for arginine vasopressin and finds it is nonexistent in many of us.
That is interesting.

I think there are many aspects that either have just one or two small studies that have never been properly followed up on, or have never been investigated at all.
 

dreampop

Senior Member
Messages
296
Look at the MIDBRAIN
-The Japanese Neuroinflammatory study points to that region
-The Australian study on white matter mass and astrocytes points to there
-All the autonomic problems go through the midbrain (including the hypothalamus as in the water metabolism study, neurally mediated hypotension)
-Many, many more

Look into the origin of the pressure headache - what the hell causes it? inflammation, fluid buildup, irritiation?
 

Justin30

Senior Member
Messages
1,065
A few:

  • Test for malabsorption if fats, carbs and protein
  • Test for proper digestion including enzymes if possible
  • Test muscle biopsy through micro needle punch technique (less invasive) for mito issues, neuro disorders, Rheumatic disorders and abnormalities essentially
  • USE SPECT SCANS and PET SCANS
  • Spinal Taps
All i can think of
 
Messages
88
Location
New England, USA
I'm thinking about the presenters at the IOM panel and the gaps in research in neuropsychiatry and sleep. Severe patients could be tested for cognitive function from their computers. It would be great if we could all have sleep testing from home too.

They need to fund Ron Davis. That cannot be said too many times.
 
Messages
88
Location
New England, USA
There desperately needs to be outreach to severe patients. We need research and treatments NOW.

From P2P page 13:
Telemedicine or home visits for those unable to participate in clinical trials/treatment in person and outreach to underserved communities are needed. New technologies to address underserved populations and unmet needs (e.g., mobile technology, online tracking tools) should be developed and employed to measure progress and to enable communication, especially for those who are not served in the clinic setting.
 

Simon

Senior Member
Messages
3,789
Location
Monmouth, UK
Big vote for focusing on 2-day exercise test

the first thing is to validate / replicate the 2 day cpet study (I think is called the exercise one).
Fully agree

Hi @inester7 the 2 days CPET has been replicated by the Keller group already.
My understanding is that it hasn't been reliably replicated or validated. But even if it has been replicated once, that's not enough, and it needs to be replicated on a large number of patients.
So it's a bit complicated. I blogged on this in 2014 after reading all the studies and emailing Dr Betsy Keller
New Exercise Study Brings Both Illumination and Questions
The two problems are that while several studies have found abnoramilites, they all find different differences on day 2 (VO2 max, VO2 at anaerobic threshold, metabolic efficieny), and the studies are all small. As Betsy Keller says, what's needed is a very large study ('hundreds of patients') to really work out what's going wrong. Hopefully that's excactly whaat the NIH will fund.

The Vancouver team has a 15 subject and control 2 days CPET gene expression study in the works. i do not know when this will be published, it might well be several months for this to happen, but it was funded by NIH. All exercise tests were completed a couple months ago.
Sojnds good, especially with gene expression thrown in - the Lights' gene expression study was after moderate, not maximal, exercise and it will be interesting to see how the two studies' results compare.

3. Whatever studies are done they need to use 2 day repeat testing (test one day, then give patients an exercise challenge, then test again the next day). Where applicable and possible, of course.
Safety is a big concern for sure. (Nb the NIH intramural study is built around exercise testing)
My blog said:
There will inevitably be concerns from some patients about taking a test that by definition pushes them to their absolute limits, and then does it again twenty-four hours on in the midst of post-exertional malaise.
Pushing beyond normal limits has triggered many a relapse, and sometimes patients never bounce back. But how big are the actual risks for a two-day test?

Keller says that most people in their tests report recovering to baseline in seven to 21 days, though some take longer. She also points out there is a lack of published data on long-term effects even for a one-day test, let alone two-day tests.

What’s needed, she says, is long-term follow-up looking at both symptoms and activity levels, to establish how long it takes patients to recover to baseline symptoms and activity. And she wants to use actometers (activity sensing devices) to ensure objective measurements of patient activity. This would also allow researchers to see if changes in patient activity matched the physiological changes seen on day two.

Plus, many patients, including me would refuse such a test point blank because we have relapses at activity levels way, way below that, and some people never recover from such relapses. We really need to know how representative those that take that test are of the wider patient population. But I still think this is one of the key findings in mecfs research and really needs following up.

Here is my reasoning: This study is accepted by disability and all industry. This will give us 100% of plp w real ME + will fix the gap so while the patient gets better can get some income.
Already counts in the US!
My blog said:
... a little-noticed Social Security ruling in April [2014] states that while there is not yet a ‘definitive’ laboratory test, an abnormal exercise stress test, consistent with other evidence in the case record, proves a ‘medically determinable impairment’ in those with ME/CFS. And Keller reports that insurers increasingly accept her tests as evidence of incapacity. The two-day test could help secure a financial lifeline for patients.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
I find it difficult to know what specific research I would recommend, because I don't know where the answers will be found. If I knew where the answers will be found then it would be an easy question to answer. At the moment, we simply need a vast amount of extra funding. There are a number of researchers who I would like to see have access to unlimited funds (e.g. Klimas, Fluge/Mella, Ron Davis and team, Lipkin, Younger, the Lights, Hanson, and many more), but that's not the question they have asked. My best answer, that i can think of at the moment, is that I would like research to be focused at the cellular level (like Ron Davis is doing, and like they're doing in the NIH intramural study, and the UK's MEGA omics study). I.e. looking at the structure and function of cells and cellular apparatus. Omics would be a good start, and mitochondria are an obvious place to research, but that's just the tip of the iceberg. And also, I'd like a full scale investigation of autoimmune possibilities or auto-immune-like activity. For a long time, I've suspected that it might be fruitful to look for auto-immune-like activity that isn't caused by auto-anti-bodies, but that could be caused by e.g. abnormal cell receptors (cell receptors that are abnormal by frequency, function, type or structure). I'm not sure how advanced research into cell receptors is generally, but it seems like it could be an exceptionally complex, sophisticated, difficult and unexplored area of research. I'm not sure exactly how to go about communicating any of this to the NIH.
 
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medfeb

Senior Member
Messages
491
I agree on the 2 day CPET test, even with the caveats that Simon discussed above. Another advantage of CPET is that it is widely accepted across different medical associations, at least in the U.S. and its characteristics as a test are well established for many chronic diseases - including the fact that repeat tests show consistent results in other diseases. Its also accepted as an outcome measure in numerous clinical trials.
 

Seven7

Seven
Messages
3,444
Location
USA
Already counts in the US!
The problem is accessibility, I guess I should have said that we need it like standard test in all hospitals so we don't have to travel to California or MIA just to the few people running the 2 day one today.

I want the test to be offered in any town with the existing equipment / technical personal.
 

Tuha

Senior Member
Messages
638
I think it´s really difficult to say what is the best to study - even ME researchers wouldnt have the same opinions.

But what I would like to see that federal agencies sit together with our best researchers in one room. They will put significant amount of money on the table and they will discuss together the best and most promissing area, sharing data, organising new research studies for several years and so on.
 
Messages
88
Location
New England, USA
I'm thinking about the presenters at the IOM panel and the gaps in research in neuropsychiatry and sleep. Severe patients could be tested for cognitive function from their computers. It would be great if we could all have sleep testing from home too.

They need to fund Ron Davis. That cannot be said too many times.

There desperately needs to be outreach to severe patients. We need research and treatments NOW.

From P2P page 13:
Telemedicine or home visits for those unable to participate in clinical trials/treatment in person and outreach to underserved communities are needed. New technologies to address underserved populations and unmet needs (e.g., mobile technology, online tracking tools) should be developed and employed to measure progress and to enable communication, especially for those who are not served in the clinic setting.

Let me try this again.

Since the room is spinning and I feel like I'm going to throw up, this will be short.

1. The Open Medicine Foundation team needs to be supported to continue and expand their research; especially research involving severe patients as the Open Medicine Foundation is already set up to do this and equipment has already been specifically invented for this research. Furthermore, as they have expressed interest in collaborating with the NIH study, that should also be supported.

2. Collaboration among all top biomedical researchers sharing data must be supported.

3. Severe patients that are unable to leave their homes; some for years or decades, are going without medical and dental treatment and need immediate care. Research needs to be done to find these patients and provide outreach to them. These are patients that can then be used in biomedical research. They are also patients that should be monitored from their homes through technology that is already in existence and that could be created. Things like sleep, heart function, cognitive function, etc. could be tracked for research purposes, for the purposes of providing appropriate medical care with things like CPAP machines and appropriate prescription medications, and for the purposes of documenting disability so that patients can receive the benefits that they are entitled to. This fragile population must be identified and served. Lastly, if this part of the ME/CFS population is too ill to leave their homes now, that will still be the case if/when biomarkers and treatments become available.
 

Justin30

Senior Member
Messages
1,065
I know this does not tie into the NIH Question but kind of......

BUILD A CENTER OF EXECELLENCE THAT:
  • Has all equipment needed to test patients
  • Have beds in the center to conduct research
  • SPECT, PET, FMRI
  • Biopsies stomach, muscles, intestines, etc.
  • Learn the subsets...through symptom clusters and levels of severity
  • Test for All known Autoantibodies
  • Build another biobank
  • Microbiome and stool analysis
  • Tilt tables, Autonomic testing center
  • Sleep analysis/EEG
  • SFN testing
  • Screening center that lists all tests including Neuro, Rheumatic, Tumor, Paraneoplastic diseases to be ruled out prior to admitance.
The sooner they do this the sooner answers will start to show themselves....

Subsets will be defined. Biomarkers determined......people will be saved

Build it and we will come......
 
Messages
2,087
For me this is significant because it demonstrates a significant plan to research ME. We should be celebrating that.

Also, one of the most interesting elements to me was this

  • For this RFI, the NIBIB is interested in the ideas for the development of new imaging and bioengineering technologies that could have the potential for a significant impact on ME/CFS research.

They are talking about developing new technologies to research ME/CFS not just using existing ones - how amazing is that ?