USA: National Institutes of Health (NIH) intramural ME/CFS study

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Not bad. Could have been better, could be worse. The scale of the problem isn't well-represented, but then it rarely is, even in other diseases.

Best thing out of this is if it leads to more participants in the study.
 
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Patients Push Limits for Clues to Chronic Fatigue Syndrome By LAURAN NEERGAARD, AP Medical Writer (Jan 8, 2020)

Researchers hooked Zach Ault to medical monitors as he slowly climbed onto a gym bike. An invisible disease is sidelining this once avid athlete and he knew the simple exercise would wipe him out -- but Ault was pedaling for science.

Chronic fatigue syndrome is one of medicine’s most vexing mysteries. Now doctors at the National Institutes of Health are using volunteers like Ault for a unique study that pushes their limits in search of what’s stealing all their energy.

“I’ve tried to exercise my way out of this multiple times and I’ve put myself in deeper pits every time,” said Ault, 36, of Paducah, Kentucky, as he began a nearly two-week stint at the research-only hospital outside the nation's capital.
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“The ignorance about the condition just vastly dwarfs what we know about it,” said Dr. Walter Koroshetz, director of NIH’s National Institute for Neurological Disorders and Stroke, which is leading the research.
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Part of the trouble is that varied symptoms make it hard to compare patients. A patient advocacy group called Solve ME/CFS Initiative is preparing to open a registry where patients can send in medical information and blood and saliva samples to help scientists expand research.
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There are some clues. Earlier studies have found brain inflammation in patients, and nervous system abnormalities that might explain why they feel worse upright than lying down. The immune system seems to be on chronic alert. Then there’s the energy drain. Just last month, Cornell University researchers reported that patients' key immune cells don’t make energy properly.
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Is this the post-infectious study?
 
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Interesting that his onset followed strep throat. I suspect my onset also followed strep. I (foolishly) didn't see a doctor about it, but it was unlike any sore throat I'd ever had. Every time I swallowed, the back of my throat felt like I was drinking acid. Those sore throat lozenges were useless. That went on for 2-3 days, as I recall. Didn't fully recover for 2 weeks. A week after that, bang!, onset of ME/CFS.
 
It may be difficult to find participants for a study that are fairly ill that could be crashed and worsened by a study like this, without paying them (on top of travel expenses, etc). Especially with the lack of trust the patient community may have for the NI . Yes we are all willing to sacrifice anything for great scientific advancements but many of us may be skeptical that our personal sacrifice would even be proportionate to the dent it would make in the scientific ignorance of this illnes . The cost benefit needs to make sense. When people participate in cancer clinical trials they often get both a) the sense that they are contributing to speedy, cutting edge research, and b) a possibility of recovery.

Since we dont have clinical trials of much value for this illness, the NIH should offer pay to participants , beyond the stipends for travel, etc.

This is an example of where adequate funding could speed up the process greatly
 
I do think that it is important to note that all of the patients that I know of who have participated in this effort have found it to be a positive experience. If I were in the range of the cohort being studied, I would not hesitate to participate. This is an unusual opportunity - NIH doesn’t do these kinds of internal studies for most diseases. I hope that it gives us information that we might not have without the unique investigatory methods that NIH can employ to dig into this disease.
 
An important update that I have confirmed with Angelique Gavin, the recruiting coordinator.

Foreign (non-US) patients with medical records in English, French, Spanish, German or Russian are eligible for participation in the NIH intramural study. The NIH has a record translation service that will translate documents in these languages provided by applicants.

Foreign patients will be compensated for their participation, but their travel fees will only be reimbursed for travel inside the US (from the first point of entry). For example, if you fly from London to New York (JFK) then from JFK to the national airport in Washington DC (DCA), you will be reimbursed for the JFK-DCA round-trip.
With this being said, I know of one Canadian patient who will have their Vancouver-Dulles round-trip reimbursed, as it's not much more expensive than a domestic US flight.

Below are screenshots from the mail exchange I had with Angelique.

About foreign participants. Note that we talked about the travel fees on the phone after this mail, which is when she told me about reimbursement for US domestic travel.

nihmail.png

About the language of medical records

nihmail2.png

I have applied to the study. I had a phone interview with Angelique yesterday and I'm now waiting for a call from Dr Wallitt.
 
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cassava7 said:
An important update that I have confirmed with Angelique Gavin, the recruiting coordinator.

Foreign (non-US) patients with medical records in English, French, Spanish, German or Russian are eligible for participation in the NIH intramural study. The NIH has a record translation service that will translate documents in these languages provided by applicants.

Foreign patients will be compensated for their participation, but their travel fees will only be reimbursed for travel inside the US (from the first point of entry). For example, if you fly from London to New York (JFK) then from JFK to the national airport in Washington DC (DCA), you will be reimbursed for the JFK-DCA round-trip.
With this being said, I know of one Canadian patient who will have their Vancouver-Dulles round-trip reimbursed, as it's not much more expensive than a domestic US flight.

Below are screenshots from the mail exchange I had with Angelique.

About foreign participants. Note that we talked about the travel fees on the phone after this mail, which is when she told me about reimbursement for US domestic travel.

View attachment 9626

About the language of medical records

View attachment 9625

I have applied to the study. I had a phone interview with Angelique yesterday and I'm now waiting for a call from Dr Wallitt.
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Great. To facilitate sharing:
 
debored13 said:
I appreciate that, but some who are severely Ill may not find it to be worth the effort, given the effort may worsen them semi permanently and we have absolutely zero idea when the study will yield results.
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The study isn’t designed to be open ended. The original study design was for a three year period. I wouldn’t expect the most severely ill to participate, but in my opinion they are probably not the best candidates for this cohort anyway. Being bedridden and trying numerous treatments cause physical changes that could distort the results.

There are, of course, no guarantees that significant findings will come from this study, but if they don’t, with every possible technique NIH has being used to look at these patients, that will at least be an indication that we may need to rethink what we believe about this disease and go in a completely different direction.

I probably mentioned this before, but when this study was first announced, Dr Nath spoke here in Atlanta at CDC. Although I don’t get around easily, I was determined to see him eye to eye. As you may have noticed, I’m a fairly skeptical person and I wanted to see whether he was a reliable scientist.

I talked with him and was very impressed by him. ME/CFS is not his specialty and he doesn’t want it to be. He was asked to do this study by Dr Collins. But he was excited to see what he could find out. Nothing that I have seen makes me think that he is anything other than a world class scientist doing a careful and thorough study.
 
LorsP said:
I have applied for the study twice (by email) but have heard nothing back. Can you please tell me how you applied / provide me with a link to a working email address? Many thanks.
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Angelique's contact details are:

Angelique Gavin, angelique.gavin@nih.gov, (301) 496-4000 (this is the number she called me with).
Alternatively you can try: mecfsemail@nih.gov, and one of the following phone numbers: (301) 496-1788, (301) 402-0880.

I hope this helps, please let me know if you're able to reach her. Otherwise I'll let her know and ask her for her most up-to-date contact info.
 
cassava7 said:
Angelique's contact details are:

Angelique Gavin, angelique.gavin@nih.gov, (301) 496-4000 (this is the number she called me with).
Alternatively you can try: mecfsemail@nih.gov, and one of the following phone numbers: (301) 496-1788, (301) 402-0880.

I hope this helps, please let me know if you're able to reach her. Otherwise I'll let her know and ask her for her most up-to-date contact info.
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Many thanks - I’ll certainly keep you posted :)
 
The Associated Press published a syndicated article last week profiling a study being done by the NIH on ME/CFS. The article describes well the severity of ME, and the immense challenges our community faces, including lack of treatments, difficulty getting a diagnosis, skeptical doctors and a lack of knowledge about the disease.

While the AP article explains well the dire nature of ME/CFS, the reporter fails to mention how the NIH has played – and continues to play – a central role in perpetuating this health crisis, which has plagued the ME community for nearly 40 years since ME/CFS captured national headlines in the early ’80s.

...

#MEAction has written the following letter to the AP journalist to explain the larger story at play.

MEAction: NIH Neglect Is a Key Reason For The ME/CFS Crisis
 
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