• 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 (FM), 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.

NIH to focus its ‘world-class’ technology and expertise on ME/CFS (blog)

Simon

Senior Member
Messages
3,789
Location
Monmouth, UK
NIH to focus its ‘world-class’ technology and expertise on ME/CFS | #MEAction

My new blog at MEAction based on Dr Avindra Nath's Solve ME/CFS initiative webinar hosted by Zaher Nahle

The phrase that stood out in Dr Avindra Nath’s description of the NIH ME/CFS study was ‘world-class’. He emphasized the innovative technology the NIH has at its disposal, and its distinguished experts on just about every subject that’s relevant to ME/CFS. Nath mapped out how the study will bring some serious firepower to the study of ME/CFS, particularly to get a better understanding of what’s really going on in the immune system.

Nath also expressed concern that the ongoing level of criticism of the study from patients is putting off good biomedical researchers lending their expertise to the study.

Late last year, Director Dr Francis Collins assembled a team of experts, including Nath, to discuss what the NIH could do to study ME/CFS. The discussion soon focused on the role of the immune system and Collins asked Nath to lead an in-house (intramural) study.

Nath’s credentials make him very well placed to study ME/CFS, with expertise in immunology, viruses, and the brain, but he’s also a clinician: a rare combination of skills in his field of neuroimmunology and infectious diseases. Nath has seen many ME/CFS patients himself, and added that his role running a multiple sclerosis clinic might be relevant as well. Fatigue is often the most disabling symptom in multiple sclerosis, and many patients respond to immunomodulatory drugs. Nath has already said that if they can identify immune problems in ME/CFS, the final phase of this study would be to test if immunomodulatory drugs can improve the health of ME/CFS patients.

Nath’s hypothesis is that, for a substantial subgroup, ME/CFS is triggered by a viral illness that results in immune-mediated brain dysfunction. As he explains, “that brings in our expertise: we have the virology, we have the immunology, and we have the neuroscience.” The study focuses on patients who had an infectious onset, which could be bacterial as well as viral.

NIH study aims to find new avenues to explore…
According to Nath, there are basically two ways to run a well-designed study: you can do a few things to a lot of patients, or you can take a few patients and run a wide variety of tests.

The NIH intramural program excels at doing a really deep study of a few patients, he said, while outside research groups were very good at focusing on a relatively few things in a very large group of patients.

The NIH is uniquely well-placed to do a small, exceptionally intense study of patients because of its leading-edge technology and breadth of world-class researchers. It is the researchers’ hope that the study will generate new findings that outside researchers can then explore in larger, more focused studies. That, of course, is a case where RFAs and NIH grants will come in.

Three-stage study
This “study” is actually a series of three. Phase one, the focus of Nath’s talk, is the deep, deep study of patients that aims to clearly identify abnormalities and biomarkers – ideally, those that play a role in driving the disease rather than simply being markers of it. Phase two aims to check that these findings hold up in a cohort of patients tracked over time. The final phase aims to target those abnormalities with drugs, to see if changing those factors will impact the illness.

Assessing patients, probing fatigue
Phase one of the study starts with a detailed clinical profile of every patient: this includes the usual in-depth history, physical, psychiatric, infectious disease and neurological assessments, and the less common endocrine function, autonomic function, exercise capacity and fatigue testing.

Measuring function both before and after exercise is a core part of the design.

Next, the researchers will systematically probe the physiology of fatigue by measuring function of brain and body both before and after exercise. That’s a core part of the design, and never before has a study taken such a comprehensive look at the impact of exercise on patient’s biology and functioning....


....
Dr Avindra Nath’s expertise in neuroimmunology and infectious diseases is a good fit for ME/CFS. That the NIH have him working on Ebola and Zika indicate he’s highly-rated; and his publication record is deeply impressive. The study pursues a hypothesis many researchers share: that an initial infection triggers abnormalities in the brain and immune system leading to the symptoms of ME/CFS. Nath’s study brings many new techniques to ME/CFS, will bring in top-notch researchers, takes a comprehensive approach from metabolism to immunology to cell culture, and is built around studying the impact of exercise on patients. There is good reason to hope that the NIH, with its unique resources and approach, will find something new and important that will dramatically advance our understanding of ME/CFS.

Read the full blog
 
Last edited:

Simon

Senior Member
Messages
3,789
Location
Monmouth, UK
This bit might be controversial:

Time to let the NIH get on with it?
This study has become a hot potato, and that’s clearly taken Nath, and others at the NIH, by surprise. I doubt many there are used to such sharp and informed criticism from patients. Nath was clearly a little frustrated with the level of continued public criticism from patients, which he feels is now harming the study by putting off researchers he wants to help. One scientist told him “I don’t want to have anything to do with it, I’ve got enough things that I’m doing.” Others who typically say yes to Nath haven’t got back to him with his request to work on this study.

These NIH studies don’t have hierarchical teams where the boss allocates his or her people. Mostly researchers – many of them leaders in their field – get to choose which projects they work on. Only two people will be recruited to work full-time on the study, a nurse and a coordinator: Nath needs most of the rest to agree to help.

These aren’t the kind of researchers patients might not want to see on the study: Nath’s focus is purely biomedical. He stressed that he was a neurologist who knew nothing about psychology or somatisation, and he wasn’t interested, either. He’s not trying to pull in people to look at the psychology of ME/CFS.

He cautioned patients to be “a little bit careful as to how critical you become. You can end up antagonizing all these people and they are busy doing other things, you can’t force people to study your disease.”
 
Last edited:

duncan

Senior Member
Messages
2,240
@Simon, I am sure you mean well. This is certainly well written. You do a superb job of describing some of the study's undeniable strengths. You clearly put a good deal of effort into this, and you should be commended for that.

Unfortunately, to me it doesn't seem balanced.

From Nath seeming to conflate fatigue with CFS, to "someone" at the NIH admitting three psychobabblers into roles of gatekeepers, there are issues with the study that should not be glossed over. I'm not sure you even addressed them. The key and inescapable hazard here is that the patient cohort may be misidentified. Nath's reassurances not withstanding, our history has been in great measure defined by "mistakes" in populating studies. His Don't Worry About It only suggests to me he needs to hone up on his ME/CFS history.

The study to some appears front-heavy with flaws, and the history of the NIH and CDC relative to ME/CFS is not one to build a resume around. Nath chastising us for offering up valid criticisms seems more than a little inappropriate given the historical context (and US Govt agencies' role in that), and given the flaws that are still left unresolved.
 
Last edited:

msf

Senior Member
Messages
3,650
He doesn´t seem to understand that most of the people who are being criticised are those the ME community does not want anywhere near an ME study. If someone is a serious biomedical researcher, I see no reason why they would be put off studying ME by criticism of psychobabblers, unless it´s a case of ´you were mean to my friend so I´m not going to help you,´ in which case I think anyone who has psychobabblers for friends would probably find it hard to get to the bottom of ME anyway, and the criticism may help them to avoid making the same stupid assumptions their friends made.
 
Last edited:

Justin30

Senior Member
Messages
1,065
@Simon, I am sure you mean well. This is certainly well written. You do a superb job of describing some of the study's undeniable strengths. You clearly put a good deal of effort into this, and you should be commended for that.

Unfortunately, to me it doesn't seem balanced.

From Nath seeming to conflate fatigue with CFS, to "someone" at the NIH admitting three psychobabblers into roles of gatekeepers, there are issues with the study that should not be glossed over. I'm not sure you even addressed them. The key and inescapable hazard here is that the patient cohort may be misidentified. Nath's reassurances not withstanding, our history has been in great measure defined by "mistakes" in populating studies. His Don't Worry About It only suggests to me he needs to hone up on his ME/CFS history.

The study to some appears front-heavy with flaws, and the history of the NIH and CDC relative to ME/CFS is not one to build a resume around. Nath chastising us for offering up valid criticisms seems more than a little inappropriate given the historical context (and US Govt agencies' role in that), and given the flaws that are still left unresolved.

I totally get where you getting act based on the past.

All patients that are being sent to the NIH that have ME/CFS are from well established ME/CFS Clinics am I correct on this as I believe Nath pointed this out. So even if you have the 3 psychobabblers doing the final once over it might be pretty tough to for them to find the potential one or two outliers...that have for example major depressive disorder. If in deed thats what these individuals are looking for.

I share your concerns that these people should not be involved but I am almost positive the dont have any others that have seen ME Patients at the NIH.

So if you have 40 CFS/ME controls and the massive amount of tests being run, dont you think people that dont fit the bill will stand out like a sore thumb?

The reality is, is that people in the ME community have likely outright sent nasty, threatening and derogatory emails to the Psychobabblers. This in a community like the NIH, probably like a big kid version of high school could spread like wild fire.....not to mention give the psychbabblers more ammunition.

With what Fancis Collins said do you think he honestly wants his subordinated, Nath, Wallit, etc. to not find the biological cause? To come up with empty hands?

Nath sounds bothered as I bet Collins wants him to get to the bottom of it.....saying we need Drs like this helping out.... yet they are turing away because we as patients can only clog certain Drs inbox's with emails who then have conversation with another Dr....and the roomer spreads just like in high school...

Nothing is ever perfect....if it turns out that some patients are not coming from ME/CFS Clinics then this is a bit more concerning.

I see your point @msf it, this could be the case but I bet you Nath, the kind of people he is looking for are highly specialized, that offer a skillset or experience that not many Drs have.

I dont think the goal of this study is to waist a S*** ton of money. The list of testing is incredible.

Dont forget we have protests coming up all ovwr the US and a petition on Change.org that has over 25,000 Signatures....sign it if you havent done so already.

https://www.change.org/p/increase-funding-so-we-can-find-a-cure

We have OMF working on it and countless others as well....

There is no doubt in the eyes of the NIH Director the disease is real.....
 
Last edited:

duncan

Senior Member
Messages
2,240
@Justin30 , you seem to have put a lot of thought in your observations. I will try to address at least the major ones you made concerning my post.

1) The six clinics may be well-established, but I am concerned that some of these clinicians may not fully appreciate PEM, or be able to discern the difference between chronic fatigue and CFS. If my concerns have merit, then the patients coming from those clinics might not have ME/CFS.

2) Do I think these NIH investigators will be able to discriminate between pwME and those without, even with the aid of sophisticated technology? I do not. They have no baseline upon which to gauge.

3) I have no idea what the reality is of whether or not some patients sent nasty emails. I think the investigators should be familiar enough with our extended plight to be able to shrug these off, even if the rumor proves to be true. If they cannot, they should be intelligent and mature enough not to indict an entire community of tens of thousands of sick individuals, based on just a few misguided emails.

4) I do not personally know Francis Collins, but I well know the NIH's long-standing historical indifference to our struggles. In that context, I have little reason to trust him yet.

5) I do not know Nath well enough to ascribe any reason for his tone. As for researchers turning their back on desperate sick people who may have lashed out in despair, I would opine those researchers are no longer in high school.

It's not like I believe nothing meaningful ever comes out of the NIH; that would make me more or less NIHilistic....

Ok, clearly I need to stop writing now. :)
 
Last edited:

Bob

Senior Member
Messages
16,455
Location
England (south coast)
I have no idea what the reality is of whether or not some patients sent nasty emails. I think the investigators should be familiar enough with our extended plight to be able to shrug these off, even if the rumor proves to be true.
The problem I have with this is that we expect the NIH staff to have empathy and compassion, but then we aren't able to show the same empathy to them. If they are having a hard time, then tough, we expect them to tough it out. They should be tough enough, grown-up enough, wise enough, and intelligent enough to deal with it. That's exactly the attitude we don't want them to have towards us.

Note: The issue of nasty emails has been a bit of a non-issue for me; I don't know if any have been sent, or what's been sent, and I can't do anything about it if any have been sent.
 

duncan

Senior Member
Messages
2,240
If they are having a hard time with what? Understanding what's been happening to us for the last three decades? Understanding that a few sick people might feel terribly disenfranchised and desperate enough to email them directly - when perhaps they should not - maybe because the clock has been ticking for so long with no progress while their health worsens?

What is it you expect us to understand of them? That they have reasons for crafting a study that may not be able to do what it needs to? That perhaps they have been "encouraged" to volunteer, so they shouldn't be expected to do a super study? That they have a lot of pressure on them? That they shouldn't have to hear from us except thru a mouthpiece that distills the message?

Can we trade with them?

I'm not clear on your logic, @Bob.
 

Justin30

Senior Member
Messages
1,065
1) The six clinics may be well-established, but I am concerned that some of these clinicians may not fully appreciate PEM, or be able to discern the difference between chronic fatigue and CFS. If my concerns have merit, then the patients coming from those clinics might not have ME/CFS.

I understand this concern it is valid. I guess what I would hope that these clinics have done the full immunological, viral, bacterial, autoimmune, OI and CPET testing already validating the patient cohort which would be good.

I have been to and have spoken to many people that have been to see established CFS clinicians and their workup is usually exhaustive. Some will not even take patients unless everything else has been rules out.

2) Do I think these NIH investigators will be able to discriminate between pwME and those without, even with the aid of sophisticated technology? I do not. They have no baseline upon which to gauge.

I agree that there has been no defined baseline. That being said we have at least some inf in a subset through Lipkin who I am sure got a lot from Petterson who in turn got his testing done by Klimas that shows immune abnormalities.
That being said a person that has a disease will have a profile different then a person with a disease. Its a given....
They will check in everypart of the body, including the brain.
The base line in my opinion does not have to exist as long as a group that are proclaimed sick have a set of abnormal findings from the healthy controls. Which can be clustered than then tested on a larger group, etc.
The only group that bugs me is the lyme group that bugs me is the recovered Lyme Group.
I personally think that they may find different sihnatures in different people as this happens in many Autoimmune diseases such as Lupus...which I am not saying this is.

3) I have no idea what the reality is of whether or not some patients sent nasty emails. I think the investigators should be familiar enough with our extended plight to be able to shrug these off, even if the rumor proves to be true. If they cannot, they should be intelligent and mature enough not to indict an entire community of tens of thousands of sick individuals, based on just a few misguided emails.

I dont know the extent but it was enough to have one of the top Neuro/Immune/infecious Drs make a point of it. He obviously wanted a specific Dr involved who is now not wanting to partake as a result of emails, etc.

That being said I am frustrated sick in bed and am pissed off about the situation.....i honestly dont know how you couod look at an ME patient in a crash and not see how sick they are. Research should have started 30, 40, 50 years ago but at least it is starting now.

Its not going to be perfect but they want to include us as long as we arent abusing them.

If you were getting abused and harrased...and having your name spread all over the internet because of your beliefs...and your friends, colleagues, etc saw this then they would like take it in a few ways....if it were me I would say F*** them I am trying to help and the dont want it.....if was a colleagues name that was being spread around that I knew well, I would say have fun fighting that battle....and if I was an healthy outsider looking in I would see your way that we have been given the shaft and another way that these people are histaricle because thats most of what people know about ME is that we are crazy.

Regardless it impacted Nath getting someone he thought would help us and that is what is bothersome....Nath openly said he doesnt deal in pschiatry...so more then likely is was a biological based individual.

4) I do not personally know Francis Collins, but I well know the NIH's long-standing historical indifference to our struggles. In that context, I have no reason to trust him.

Fair enough NIH and CDC ruined thousands/millions of peoples lives.

Collins openly stated this is a devasting disease that leaves many housebound and bedridden on a well publized interview. He got this study going. He aknowledged are long wait for answers and struggles. Everything he stated openly he has done. I would rather have a study than none at all....

Further Zika, Ebola and other known viruses, vaccines, etc. are popping up with similar sequale/symptoms.....millions are being dumped into Zika what if our immune signature matches theirs or post Ebola Virus?

5) I do not know Nath well enough to ascribe any reason for his tone. As for researchers turning their back on desperate sick people who may have lashed out in despair, I would opine those researchers are no longer in high school.

So I have been to many top Drs/Researches. Bed side manors are usually not their strong suit in my experience. Intoverted, highly intelligent, base everything on tests and facgs.

The man may have been traveling for weeks which is likely..he has been dealing with Zika...that aside

He has repeated many of the same things over and over again.

His tone is what it is...he wants us involved....

His tone at times bothered me....but many variables play into this....

Some people do not have thick skin, some do, some though intelligent are extremely immature, some are Ego maniacs, some are compasionate, some are not based on the facts.....regardless in a community such as the NIH that has a working group that spans many centers roomers will emerge and as adults we all know at times we can act like children...and when I make this statement I am refering to myself as well....

Ducan I value everything that you say and am not trying to offend you. We are a community of people that have been neglected and want to get well.

I share this life robbing disease with you but I have hope that this is a new beggining and with OMF happening at the same time I hope they will be able to find something that will help us...
 

Justin30

Senior Member
Messages
1,065
One last point is that if you are in a severe ME Category you have know idea what living with the disease is like......its a F****** nightmare...

If I was told how much dysufunction could happen i would say you are crazy....you would die....i straight up thought this moring I was done....but low and behold I came around...its such a mess of a disease....

Many Drs have told me we dont have the tests and we dont have all the answers and we lack effective medication....pretty bold statements but true....this is why they refer to Drs as practicing.

They best part about this is we live in the twenty first century.....things happen more rapidley with advances in technology...

If we figure out how to do what AIDS did then we are off to the races...

The NIH will use tests never done on ME which is the latest and greates further these tests will lead to other tests and so fourth.....i have to believe as I dont want to give up before we have a chance...
 

CFS_for_19_years

Hoarder of biscuits
Messages
2,396
Location
USA
Simon, thanks for a well-written summary of what Dr. Nath discussed. It was a very long talk.

@Simon, I am sure you mean well. This is certainly well written. You do a superb job of describing some of the study's undeniable strengths. You clearly put a good deal of effort into this, and you should be commended for that.

Unfortunately, to me it doesn't seem balanced.

From Nath seeming to conflate fatigue with CFS, to "someone" at the NIH admitting three psychobabblers into roles of gatekeepers, there are issues with the study that should not be glossed over. I'm not sure you even addressed them.

@duncan, Simon reported exactly what Dr. Nath discussed. When you say "it doesn't seem balanced" do you mean that Simon should have made a critical analysis of the call and study design, or do you mean that Dr. Nath himself didn't cover the issues in a balanced way?

Were you hoping Simon would write an opinion piece on the webinar and study design? Simon's article seems to be a point-by-point account of what was actually said.

Dr. Nath and Dr. Nath's webinar are already being discussed in this thread, with people discussing the same points you brought up, including the three psychobabblers:
http://forums.phoenixrising.me/inde...l-study-to-give-solve-webinar-21-april.43573/

The full transcript of the webinar is here:
http://forums.phoenixrising.me/inde...e-cfs-initiative-webinar-21-april-2016.44231/
 

duncan

Senior Member
Messages
2,240
If the blog were merely embellished stenography, fine.

If the intent of the blog was at all to report, then, yes, I think there should have been some attempt at balance, e.g., not taking everything Nath said at face value or left unchallenged. Or if no attempt to balance, at least simply report in a disinterested voice, and do not allow a bias to show - wording matters, and to me at least, it seems Simon - who is a fine writer - was a fan and made no attempts to hide that.

Nath acted as a spokesperson for this NIH study. He was promoting it. In a way, his talk WAS a promotion.

This blog got the NIH double the bang for its buck. It showcased its assets while omitting its blemishes. Repeat advertising, if you will. So, buyer beware.

Now, it IS a blog, and Simon can write whatever he wishes because it is his blog. But yes, I think it would have been better if it were more balanced.
 

*GG*

senior member
Messages
6,389
Location
Concord, NH
I totally get where you getting act based on the past.

I share your concerns that these people should not be involved but I am almost positive the dont have any others that have seen ME Patients at the NIH.

So if you have 40 CFS/ME controls and the massive amount of tests being run, dont you think people that dont fit the bill will stand out like a sore thumb?

(Not sure about this, I think with statistics, and enough of the wrong people in a study, it could be possible. Not a statistician.)

The reality is, is that people in the ME community have likely outright sent nasty, threatening and derogatory emails to the Psychobabblers. This in a community like the NIH, probably like a big kid version of high school could spread like wild fire.....not to mention give the psychbabblers more ammunition.

(I don't know this for fact, particularly in the USA, and if you cannot handle that, don't be a public servant!)

With what Fancis Collins said do you think he honestly wants his subordinated, Nath, Wallit, etc. to not find the biological cause? To come up with empty hands?

(Who knows, you never know, I think some orgs are more concerned with not coming out with egg on their faces, any more, in this situation.)

Nothing is ever perfect....if it turns out that some patients are not coming from ME/CFS Clinics then this is a bit more concerning.

(No, nothing is, but we should aim for it!)

I dont think the goal of this study is to waist a S*** ton of money. The list of testing is incredible.

(Maybe it is to spend a ton of money and find nothing, so what are these whiners complaining about?).

There is no doubt in the eyes of the NIH Director the disease is real.....

(I don't know this either, I don't follow this as closely as others, some just pay lip service to squash the flames!)

(My comments in parenthesis) Please get your rest!

GG
 
Last edited:

Justin30

Senior Member
Messages
1,065
(My comments in parenthesis) Please get your rest!

GG

I need to... this stuff gets me worked up....i think we need to give it a fare shot....everything that has been mentioned by the NIH including trying to incorporate us into the study has or is happening.

Like many diseases the truth comes out in the long run.

If the director of the NIH as well as the CDC say its real, the IOM report and the P2P report say its reel....and now we have a study.....so do you think these individuals are now going to say 5 years from now oops we were wrong all these people and "Nuts".....we just said the disease was real and now its not.....

The whole point of the study is to replicate the disease in a rat or mouse model....dont you think that says something

I believe emphasis on what the study intentions and design say and that adjustments stated by Nath to get to that endpoint will be exhaustive.

My final point is that these are not the same people from the NIH of the past....not all at least

There are things that piss me off about the study and certain people in and around the NIH that bother me but we have more now then we ever did....

They are testing us as if it was a biological disease...this is huge step forward.
 
Messages
15,786
So if you have 40 CFS/ME controls and the massive amount of tests being run, dont you think people that dont fit the bill will stand out like a sore thumb?
The published research doesn't have to talk about outliers. It can simply blend the results of two groups of patients who look very different, to come out with one group with average results overall. With a small patient group and multiple even smaller control groups, it's very easy for meaningful results to disappear.

Nothing is ever perfect....if it turns out that some patients are not coming from ME/CFS Clinics then this is a bit more concerning.
I think the other concern is that some such specialists are on record supporting GET programs as being helpful. Such a belief would suggest that they really do not understand the patient experience or research data regarding PEM. Hence they may have misdiagnosed people with ME who do not have PEM. And they may even prefer these patients, who are helped by (or at least don't complain about) prescribed GET.

The problem I have with this is that we expect the NIH staff to have empathy and compassion, but then we aren't able to show the same empathy to them.
I think it's a mistake to treat all NIH researchers as a single entity. I'm pretty sure that 6 of them don't have sufficient empathy and compassion for invisible illnesses, nor the scientific curiosity to look beyond their own very blatant and well-documented biases. I know that they will twist the data to support their beliefs, they will not listen to or believe patients, and some will even sabotage their own "biological" research to ensure that the chance of getting a positive result is minimized.

I am not going to empathize with those 6 psychobabblers. Period. I have contempt for them, and for the harm they cause patients. I am afraid of the damage they can do to this study and to patients in general, including myself.

No one, to the best of my knowledge, has said anything inappropriate about the other researchers. If those 6 don't like having their research publicly scrutinized and characterized, then good riddance to bad rubbish. They can damned well log on here and explain why it's appropriate to deride their FMD patients as having "the whack-a-mole sign", why adding 20 irrelevant metabolites to a study is a good way to specifically disprove the relevance of a single metabolite, why it's fine to redefine the threshold of catastrophization to be incredibly lower than was intended by the scale's creators, and why it makes sense to attribute genetic correlations as being the cause of catastrophization rather than the cause of the symptoms or disease.

These 6 people are dreadful researchers. And they deserve to have it said about them. Dr Brian Walitt, Dr Leorey Saligan, Dr Fred Gill, Dr Mark Hallett, Dr Carine Maurer, and Dr Silvina Horovitz. The proof is on paper in black and white. If anyone disagrees with my interpretation of their specific researcher papers, please do feel free to point out my errors. But there is no way I'm giving these 6 people the benefit of the doubt, when there is no doubt that they are capable of perverting the scientific process to prop up their own bigoted beliefs.

They are testing us as if it was a biological disease...this is huge step forward.
Some of them have done that before, and confidently proclaimed that biological abnormalities are proof of psychosomatic illness. The focus on the brain in particular can be a sign of belief in ME/CFS as a central sensitization disorder, which basically suggests that the brain is creating symptoms or sensations which are not real. E.g. there is no excessive pain, just the brain thinking there is. Or the "fatigue" is only in the brain, not in the muscles.

Hopefully this study will not be going in that direction, but Nath's continued defense of the 6 psychobabblers, and continued focus on people disparaging them, is making me start to seriously worry. It really does bear a lot of similarities to the "vexatious militant" narrative we've been getting from the Science Media Centre in the UK. To the extent that people are now characterizing those NIH emails as supposedly containing threats, even though no such claim has been made by the NIH, and certainly no proof or legal action shown.

It again feels like all patients are under attack, either for the unreasonable actions of a handful or for very reasonable and well-founded statements of a larger majority. It's highly inappropriate for the NIH and even patients to conflate the two very different behaviors as if they are somehow the same and therefore both worthy of condemnation.
 
Last edited:

Simon

Senior Member
Messages
3,789
Location
Monmouth, UK
Simon, thanks for a well-written summary of what Dr. Nath discussed. It was a very long talk.
Thank you, and yes - 9,000 words long, so was quite a bit of work to wrestle into a blog.

@Simon, I am sure you mean well. This is certainly well written. You do a superb job of describing some of the study's undeniable strengths. You clearly put a good deal of effort into this, and you should be commended for that.
Thanks.

You said it was unbalanced but the weaknesses of this study have already been explored at great length, while the strengths have largely been ignored, and I felt it was important to rebalance things. Aspects like the incredible breadth of tests: physiological, brain scans, immunological (1,500 cytokines, flow cytometry in spinal fluid for the first time), using stem cell technology to grow and test neurones from patient cells - and mostly done before and after exercise strike me as a brilliant design, yet much of this has hardly got a mention. Yes, I expressed an opinion too: having gone through it in great detail I think this is a study well worth doing.

I'm afraid I don't have the energy (it all went on the blog) to go debate all the weaknesses here (the other thread does that) but I will just respond to this, which I think is a key point:
2) Do I think these NIH investigators will be able to discriminate between pwME and those without, even with the aid of sophisticated technology? I do not. They have no baseline upon which to gauge
I'm not sure I entirely grasp the point. Every study that tries to understand mecfs tries to discriminate between patients and 'not', without a baseline as such. That's the point of controls. In this particular study Nath emphasises the need to go into the data as there will inevitably be a mixed bag (as with many neurological diseases, he pointed out) and the study/analysis is hunting for differences between patients in a way that just about every other mecfs study does not.

So if you have 40 CFS/ME controls and the massive amount of tests being run, dont you think people that dont fit the bill will stand out like a sore thumb?
Let's hope so: that's certainly the plan.

The published research doesn't have to talk about outliers. It can simply blend the results of two groups of patients who look very different, to come out with one group with average results overall. With a small patient group and multiple even smaller control groups, it's very easy for meaningful results to disappear.
It doesn't, and we can assume that Nath is basically lying about his intent (Collins too), but afer listening to Nath both here and at the telebriefing, I doubt that's the case. We would have to assume that despite what he says, Nath will ignore the lessons of other diseases and subgroups, and that rather than trying to get to the bottom of things, he will use the study to obscure and mislead.

I agree there's an issue over statistical significance with small groups and a multitude of comparisons.

Certainly there is almost zero chance of finding a single marker that distinguishes patients from controls (or one patient sub-grouip from another) because of the multiple comparison issue. But there will be a wealth of data and Nath is looking for clusters, where multiple measures/groups of patients cluster together. That, to me, seems the ideal approach to this kind of problem, and makes statistical significance more achievable. However, Nath has already said that Phase two aims to take the (few) most promising markers from phase one to validate in patients, as a longitudinal study, which will allow them to track how markers vary with severity etc. Even then, any findings will need to be independently validated.

But yes, If Nath were to choose to only analyse things at the group level, and focus on individual markers rather than clustering, it would be easy to produce a null result regardless of what's there. I just don't think that's very likely

If someone is a serious biomedical researcher, I see no reason why they would be put off studying ME by criticism of psychobabblers, unless it´s a case of ´you were mean to my friend so I´m not going to help you. in which case I think anyone who has psychobabblers for friends would probably find it hard to get to the bottom of ME anyway, and the criticism may help them to avoid making the same stupid assumptions their friends made.´
Researchers are human too. And I'd be surprised if researchers - who aren't involved in mecfs research (that's the point, bringing in fresh talent) - chose their friends on the basis of their mecfs views. I just want good biomedical scientists on the case, I don't want to vet their friends.
 
Last edited: