NIH phonecall and Q&A, Tues 8 March

[viggster]

From a high level perspective, the study looks impressive. There are some areas that could use some improvement. I prefer to 'disagree and comitt' so we can move forward. I think we can gain a lot of useful information about our illness. Also, it would be helpful if we could get a few PR folks into the study. Fingers crossed, I would like to be a study participant and plan to ask my doctor if he is involved in the screening process.

My brother was a volunteer patient at NIH, in the past. I think would be an interesting learning opportunity.

I spent some time there in 2013 being evaluated for a rare blood disorder (don't have it...I have ME instead, duh), and one thing I enjoyed about the experience: The scientist-docs spent a lot of time talking to me and I learned a lot about how an intramural protocol is run. It was a 180-degree flip-the-script experience from 'normal' health care, where the doctor gives you two minutes between 30 other patients.

 

[viggster]

Would studying "metabolic problems" potentially reveal why a subset of patients have a tendency to have postprandial hypoglycemia? More generally, some problem maintaining adequately high blood sugar after sweet meals, or when eating infrequently.

I don't know what his specific interests are so hard to say...the Solve web page says Chung studies biomarkers of aging and metabolic dysfunction.

 

[duncan]

@viggster, I also have spent time at the NIH. Several visits.

I have to agree with you, it IS an impressive process.

Personally, I enjoyed the phlebotomy Quansit Hut - alright, it wasn't a Quansit hut, but it was a LARGE hall dedicated to drawing blood. You have to take a number like at a deli counter, and when your number is called you are escorted to one of what must be dozens of stalls where all they do all day long is draw blood. Incredible. They are good at it, too. First time they drew my blood they took 25 vials, and I barely noticed it.

And the researchers spend a long time with you. They don't cut corners a lot.

I was not pleased by some feelings of an agenda, though, and of what I felt was a bias by some of the investigators. But I could have misread that. (I didn't)

Still, I would go back there in a heartbeat. It is definitely not your normal clinical experience.

My annoyance with some of the investigators aside, and my feeling really crappy, part of me enjoyed it. I felt like I was making a difference at a best-in-breed institution.

 

[alex3619]

@Justin30, I would like to try to put a different perspective on what is said in your post.

An intelligent and honest doctor would believe that more research is needed. Not that the lack of answers thus far means that the diseases are psychosomatic.

That is what should happen. It is not, however, our common experience.

Depression had Biological components to the illness and has marked changes in the brain and immune system as per Mady Hornig.

I think depression is a syndrome. Its a disorder characterized by a symptom. Much like CFS is characterized by fatigue. Treating a syndrome as a monolithic defined disorder is partly why the research is poor in my opinion. There can be many causes.

They sympathize but know its either to do with the brain or the immune system....but cant say much past that.

That is as it should be. You are lucky you have doctors like that. Out of maybe 100 doctors I have seen, two knew a lot about CFS or ME, and one admitted they did not know but would try to help manage it, but they could do nothing beyond that.

Somatoform disorders are mental illnesses that cause bodily symptoms, including pain.

Disorders/illnesses created by definition and not science are all dubious. That includes CFS, but also things like depression and most disorders in the DSM. Its not that there is not something wrong, its that we have no proof we have put a patient in the right pigeonhole, and many pigeonholes are for fictitious diseases, disorders, or illnesses.

I think depression and CFS will fracture into many variations, and many of those will be other disorders or diseases that were misdiagnosed.

Ie. Science has not caught up or has not found the physical or biological cue to describe the illness in full. This is being distorted by UK Psychiatrists and as it stands right now.....that PACE is the only piece of literature that is considered Grade A Research...Which we all know is BULLS***

I think this paragraph underestimates the scale of the problem, and the influence of central and dogmatic authority, including most of the biopsychosocial movement. Most psychiatrists, and even neurologists, and probably most doctors hide their opinions in vague and ill-defined philosophy here. The way it tends to work, and this is everywhere (Europe, China, Australia, etc.) but particularly bad in the UK, is that there are biological, psychological and social components to disease. This is superficially correct for the most part. But this is often used to justify the unproven hypothesis that the cause is mental (not psychological) and that a mental approach is best for treatment. This is in my view a form of institutional pigeonholing, and forcing doctors to pigeonhole patients. There are diagnostic codes that amount to "I don't know" but bureaucratic and insurance institutions distrust those.

Insurance companies know full well that no psychiatric diagnosis is reliable, though Alzheimers and schizophrenia may become understood and reliably diagnosable very soon, or are diagnosable now but the tests are not widely available, at least in the case of Alzheimers.

Psychosomatic means mind (psyche) and body (soma). A psychosomatic disorder is a disease which involves both mind and body. Some physical diseases are thought to be particularly prone to be made worse by mental factors such as stress and anxiety. Your current mental state can affect how bad a physical disease is at any given time.

This is philosophical sleight of hand. I wish they would stop using the term "mental", not because of stigma or anything like that, but because it promotes poor thinking. Nobody has even proven that mind exists. What we call mind is, in the simplest hypothesis, just an outcome of brain function. Mind is just a label, like depression and CFS. Something is there, but the label may not be right.

That label of mental is often used to deny patients care. Its often one more reason to deny funding for care, and deny access to medical experts. Insurance companies do this with regularity, and its been discussed in their own public documents.

The second type includes people who have a psychiatric problem that is a direct result of a medical illness or its treatment, such as having depression due to cancer and its treatment

After a very long history of research we still do not know what depression is. Diagnostic instruments pick up symptoms and attribute them to an unproven category we call depression. Do many of these patients have symptoms that might be depression? I would have to say yes. However if there is damage to energy creating pathways this may also be interpreted as depression.

Depression is just a symptom, and often a misattributed or misinterpreted symptom. Just like fatigue.

Their are new areas of science that will be more advanced in the future and will shed light on illness that Drs Cant figure out such as Proteomics, metagenomics, genetics, etc.

Yes, but the way things work these kinds of diseases and disorders are mostly treated from a viewpoint about denial of care, and sloppy research.

The issue of doctors in the NIH study who have professed psychosomatic beliefs do show proven bias that will lead to distortion of the science. Its about risk and trust. There is risk that there may be distortions. There is always risk though, even from regular doctors who do not have a claimed psychosomatic viewpoint.

The issue of trust is complicated. Suppose that the NIH find a biomarker, cause and treatment. We will be overjoyed! Suppose they are in a muddle at the and, and some start using the P word (psychosomatic, psychogenic, whatever). Some of us may say "we told you so". Suppose its worse than that, and they wind up claiming its psychological. We will totally mistrust their claims unless they can somehow prove it ... and to date such claims are typically unprovable. Its also possible that the interpretation of results may be fractured, a consensus build. Within that may be interpretations which can be used to support psychogenic claims. These are risks, and its about risk management.

Having psychosomatic claimants involved may be justified (which is a political justification) based on claims of balance or honest science. It does however go to credibility. If the science is good we wont care. If the science is poor we will have issues. If the science is bad we will lose faith in the NIH for another generation.


I have high hopes of the NIH study. I think that this controversy was completely predictable, and completely avoidable. They could do better. They didn't. They could fix this. They haven't. This is about bureaucracy and politics as much as science.

 

[alex3619]

The VO2 Max test should weed us out right away.....and hopefully NK cell function...and IL17...cd3 and 4...and who knows what else.

No research in ME will be reliable until we have biomarkers ... and I use the plural deliberately, as a biomarker is typically not 100% reliable.

 

[alex3619]

I think these discussions become muddled. I think a lot of the criticism is valid. I think personal attacks are never useful, but we need to distinguish between personal attacks and specific criticism. Asking questions, and pointing out potential issues, is I think mandatory.

What gets lost here, and sends a mixed message, is how much we appreciate the opportunity for good science. For funding. For sending a public message about ME and CFS.

We have needed this study for a long time. Its not perfect. It needs scrutiny and criticism - without that its not science. It is however an extremely valuable opportunity.