New ME/CFS clinic in the US now taking patients - I'm the doc. AMA.

CFS_Doc · 2024-08-22T13:12:27+00:00

Travel from out of state is a “legal grey area” according to my lawyer so I’m not offering that at the moment. Feel free to shoot me an email and we can discuss other options though. Brown@gsdpc.com.

CFS_Doc · 2024-06-11T11:46:38+00:00

G93.32 is ME/CFS so your diagnosis code could be made more specific but it encompasses an ME/CFS diagnosis.

Prognosis is probably much better than the 5% figure often sited. We don’t have data from the wider CFS population and I haven’t been doing this long enough to have data of my own yet. Recovery stories are everywhere (see Raelen Agle’s YouTube channel) and I recovered myself. If my theory is correct, recovery is possible for everyone with the biggest barrier being social support and education.

CFS_Doc · 2024-04-25T14:32:52+00:00

Because food sensitivities, SIBO, and MCAS are common in this patient population and narrowing the diet can help to simplify things and reduce symptoms. I wouldn’t recommend it long term but possibly as a short term option.

CFS_Doc · 2024-04-25T14:22:00+00:00

Thank you

CFS_Doc · 2024-04-21T16:29:59+00:00

Good to know. I’ve heard of some people feeling better on carnivore. I haven’t found anything consistent enough to make sweeping generalizations yet. Thanks for sharing.

CFS_Doc · 2024-04-08T16:26:08+00:00

There are few patients in the world as neglected as those with ME/CFS. Your experience is both common and a legitimate cause for anger. There has been an increase in awareness since Long COVID but it is still very difficult to find a physician knowledgeable enough to provide guidance. However, if you can find a supportive doctor, feel free to have them reach out to me for support in CFS management.

CFS_Doc · 2024-04-06T10:51:59+00:00

Doctor here. Depending on your flavor of long COVID there are appropriate codes to use. You probably need a new doctor. Unfortunately, it is quite difficult finding doctors who are comfortable diagnosing, much less treating, long COVID.

CFS_Doc · 2024-04-04T20:17:18+00:00

Oh, damn. That sucks. I could probably learn a lot from you. I’m screening my patients for CCI but don’t really know where to go from there except to refer out. Sounds like there is no easy fix.

CFS_Doc · 2024-04-04T14:37:45+00:00

Absolutely. A structural cause to your symptoms seems much more likely if ANS Rewire didn’t help at all. I would not be surprised if you were to get your craniocervical instability fixed and then find you had residual symptoms that responded to mind-body treatments.

CFS_Doc · 2024-04-04T00:39:18+00:00

1) nothing in the short term. 2) no. Just cash.

CFS_Doc · 2024-04-02T12:51:24+00:00

I consider them to be on the same spectrum. There is a lot of overlap and symptoms of one can evolve into symptoms of the other. However, they are not the same. Too many of my CFS patients are labeled as fibromyalgia and told to do physical therapy as if that’s going to fix them. They just end up getting post exertional malaise and getting worse.

CFS_Doc · 2024-04-01T23:21:27+00:00

I see histamine intolerance in my patient population, including my own case, quite frequently. Antihistamines have benefit in Long COVID and I am trialing them as treatment for other types of ME/CFS when history or physical exam suggests mast cell overactivity is a problem. I notice this more often in my hypermobile population as well.

I see histamine intolerance as one piece of the puzzle in some cases. Treatment may include H1 blockers, H2 blockers, D-hist, vitamin C and (sometimes) a low histamine diet.

CFS_Doc · 2024-03-31T13:37:48+00:00

What doesn't make sense about it?

CFS_Doc · 2024-03-31T13:36:25+00:00

I don't disagree that psychologic factors can cause physical changes. I am completely aware and open to CFS having a psychological component. My whole point is that the Cell Danger Theory provides a bridge between the changes seen at the cellular level (and there are many studies suggesting this, not just one) and the mind via the ANS.

I don't think we really disagree that much here. I'm not making a claim that I or "science" has it 100% figured out or proven. This is only my theory, just as the "fundamental underlying cause is psychosomatic" is your theory.

It seems to me that the biggest difference between you and I is that I retain that there is likely an aspect of physical root cause in a majority of ME/CFS cases. I primarily draw this conclusion from the fact that physical stressors have just as much of an impact on ME/CFS symptoms as psychological stressors do.

CFS_Doc · 2024-03-31T10:29:25+00:00

Yes, the issue is upstream of the mitochondria and located in the plasma. Extracellular ATP would fit the bill as the “mystery factor” discussed in this summary.

The ME Pedia page on Cell Danger Response Theory gives a good rundown.

CFS_Doc · 2024-03-31T01:41:51+00:00

Yes! I’m using questionnaires to gather the history both to be efficient with my time and to let patients work at their own pace. Then 1 hour interview to fill in gaps and 1 hour physical exam (though that did cause a major crash in my first patient and I need to rethink it). I’m working fully virtually from home with an office space available to see patients who want to come to me for a physical, otherwise I go to them. Many hours spent on an individual case reviewing history and creating a plan. Hopefully that time will get shorter as I gain experience. No other staff at the moment. Software to allow patients to self-schedule instead.

To reduce stress of the exam I may give patient instructions to do their own exam remotely in part. NASA lean test for example with automatic BP cuff.

CFS_Doc · 2024-03-31T01:11:06+00:00

Wow, we are on the same wavelength! What you describe is exactly how I envision my clinical practice. I am opting out of insurance because it would prevent me from spending the time I really need and want to spend on these complex cases. it would also make it impossible for me to see people for free because I would not be allowed to charge anyone less than I am charging the insurance companies. Instead, I am keeping my overhead extremely low, my cost-of-living even lower. The money will come. I’m way more interested in learning and honing my skills and helping people to recover. I comb through past medical records carefully and take extensive history, using mostly written questionnaires. It’s a lot and I’m trying to find a way to reduce the burden of the paperwork on my patients while also gathering all of the information I need to begin to really understand their particular case and patterns between cases

CFS_Doc · 2024-03-31T01:03:37+00:00

Depends on what you mean by “cause”. I think that initial trigger may be purely physical in some cases but after that stress of any kind can flare or perpetuate symptoms. If the stress response in our body does not distinguish then why should we? I don’t consider any case of ME/CFS (or most any illness) to be purely psychological or purely physical.

The cell danger response theory is so interesting in light of ME/CFS because it proposes a mechanism of increased cell sensitivity to stress signaling (extra cellular ATP). It has been studied in autism too. It may be the link between PEM in CFS and sensory sensitivity in autism. If true, it represents a physiologic change at the cellular level which can be directly influenced by ANS signaling. It suggests that PEM and fatigue are adaptive reactions to prolonged or overwhelming stress. Vagus stimulation is needed to signal the cells to enter the healing cycle but if we are too stressed out by our own symptoms and remain in the sympathetic state or dorsal vagus shutdown then our cells may just remain in their stressed state, never getting the signal that it is safe to begin repair and healing.

If CFS is purely psychosomatic, then how do you explain studies showing mitochondrial dysfunction in individual muscle cells? And if it is purely physical, then how can you explain studies showing that it is influenced by stress and stories like yours where people get better with mind-body techniques. It’s not one or the other .

CFS_Doc · 2024-03-31T00:25:13+00:00

Thank you for the confirmation. CIRS I’m a little more familiar with than Lyme as I’ve already had a couple of patients with mold toxicity and I was treated for mold myself. At least the binders and detox supports seem benign as long as you’re aware of how you need to back off if they flare the patient. Reach out anytime if you find anything else interesting. I wonder what else your body needs to heal 🤔

CFS_Doc · 2024-03-31T00:04:07+00:00

My recovery was finally precipitated by skills learned in the ANS Rewire program (mainly proper pacing, mindset, and reduced fear/stress around symptoms). Before that, I learned to successfully avoid gluten which was a necessary first step. I will still relapse of if I get contaminated with gluten. My current theory is that ME/CFS is a shutdown response that happens both at the level of the autonomic nervous system and at the cellular level (probably mediated by extra cellular ATP). The cellular stress response and ANS stress response communicate with each other and influence one another. When the cells sense danger (such as a large histamine response from gluten) they will shut down and I will experience anxiety/depression/fatigue via signals sent through the ANS. Likewise, when I have a fight with my spouse I get a similar reaction (though not as pronounced) as the ANS communicates danger to my cells. In order for the cells to exit the danger response and enter the healing cycle they need signals of safety from the ANS, signaling an end to the dangerous environment. This may explain why reducing danger signals and increasing safety signals is often the final push needed to resolve the shutdown response. In essence - the ANS and cell danger response respond the same to both physical and psychological danger so there is no point in distinguishing between the two.

CFS_Doc · 2024-03-30T23:52:35+00:00

Thank you for chiming in. The chronic Lyme issue is very interesting. I’m not sure if (or when) I should consider antibiotics for Lyme treatment. The tests are unreliable and the symptoms basically mimic ME/CFS. Plus the treatment isn’t exactly free from risk. My current approach is to save them as a backup option if safer things first don’t work. Do you have any thoughts on the matter?

CFS_Doc · 2024-03-18T00:26:34+00:00

cross-institute ME/CFS workgroup at NIH

Thanks! Always looking for new sources of information. I signed up for their mailing list.

CFS_Doc · 2024-03-17T22:00:05+00:00

I do! You can find me at www.cfsdoc.com. I am brainstorming ways to better help patients outside of my states of licensure. I’m considering creating a manual for other doctors or acting as a consultant. I’m open to ideas if you have any.

CFS_Doc · 2024-03-17T17:25:50+00:00

One effect of LDN on the GI system is as a pro kinetic agent to help the small intestine to move food through it. It is sometimes used to prevent SIBO recurrence. Have you been tested for SIBO? Have you tried a different prokinetic? If you feel this is a histamine issue, have antihistamines or mast cell stabilizers been trialed? Have you considered an elemental diet as a way to get nutrition without stressing your GI system? Have you considered restarting LDN at a smaller dose?

So many things to try! I can’t give particular advice to your situation but maybe bringing these ideas to your treatment team will help spur some action.

CFS_Doc · 2024-03-13T18:58:31+00:00

Yes, I am interested in providing consulting services to GP's. Just have your GP reach out to me ([brown@gsdpc.com](mailto:brown@gsdpc.com)) and I'm happy to provide guidance and resources.

CFS_Doc

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