What ‘it’ is - revisited with reductionism

[Stretched]

After 30 some years of reading the research and living it’s progression I have come full circle to the opinion that CFS is really an ongoing manifestation of anxiety. It’s physiology is explained in the HPA-axis / pituitary research publications outlining how its upregulation causes ongoing production of cortisol and adrenaline and correlates which in turn manifests symptoms.

It’s not inconsistent with some perennially sought after latent virus becoming active, e.g. a common cmv-type or stealth virus that triggers and brings about this state. This explains its ongoing symptoms and why rest is ameliorative and how system slowing medications limit many of its affects. Further, it allows for the ubiquitous nature of MECFS, including children PWCs, and occurrence across races.

Might there be a reuptake accelerator in the offing?

 

[Wishful]

I wasn't anxious before developing ME; I had quite a relaxing lifestyle. I don't think that developing the symptoms caused me anxiety. Annoyance, but not anxiety.

Also, rest isn't ameliorative for any of my ME symptoms. If anything, exercise sometimes reduces my symptoms a bit. Lack of sleep doesn't make my ME worse, and extra sleep doesn't make it better. I'm not even sure what drugs are 'system slowing', but I don't think I've had any, and if they did, they didn't help.

 

[Stretched]

I'm not even sure what drugs are 'system slowing'

Benzodiazepines, e.g. Klonopin as proselytized by early doctors, like Paul Cheney and Charles Lapp, both MDs (see Publications), SSRI & Trincyclic antidepressants, muscle relaxers, noortroopics, et al. There are always exceptions; your symptoms may be.

 

[Wishful]

I did try some SSRIs. They made me dizzy at higher dosages, but had no effect on my ME symptoms. Rhodiola rosae made them much worse.

With ME, I think we're all exceptions to the rules...and we don't even know what the rules are.

 

[Pearshaped]

@Stretched
for the most of us, real,physical symptoms were there first.
some of them are measurable.

Once life quality is really getting impaired under those symptoms,its no wonder anxiety or agitation can arise.
its usually a CONSEQUENCE, not the cause.

If a lack of sleep,normal house chores or exercise won't make you worse,I higly doubt you have ME.
It must be something else then.

 

[Wishful]

If a lack of sleep,normal house chores or exercise won't make you worse,I higly doubt you have ME.

No, there's a wide range of symptoms and sensitivities within the definition of 'ME'. Some people have physical limitations from ME; others don't. I did get PEM from physical exertion before, but I managed to cure that. I've recently done a long bike ride, and moved a lot of wheelbarrows of soil, both activities making me quite sore in the mornings, but no PEM. My last drive into town (no significant physical exertion, but more cerebral exertion) did cause PEM. I expect that some PWME are very sensitive to inadequate sleep, and others aren't. Sensitivity to physical exertion and inadequate sleep are simply not critical aspects for defining ME.

 

[Stretched]

For clarification, my crashes and feel-bad days coincides with the feeling of increased adrenaline and or cortisol flow in my gut. Even reading or working mentally causes this affect. Then symptoms!

The above post/thread is an opinion reduction to one conclusion from earlier research, partially explained here
(other interpretations are welcome):

Advances in Understanding the Pathophysiology of Chronic Fatigue Syndrome
See https://www.healthrising.org/blog/2...ic-fatigue-syndrome-me-cfs-drug-trial-begins/ It discusses how stress and the immune system works to sustain this illness. (Anthony L. Komaroff, MD)

Could the Brain's Mast Cells Be Causing Chronic Fatigue Syndrome (ME/CFS)?
http://simmaronresearch.com/2018/09/brains-mast-cells-causing-chronic-fatigue-syndrome-mecfs/
Consider the author’s premise: “Theoharides’ mast cell ME/CFS hypothesis begins with a hormone – corticotropin releasing hormone (CRH) – which is released by the hypothalamus during stress and which has been implicated in a series of neuroinflammatory disorders... “

Bateman Horne Research Center, Dr. Lucinda Bateman, leading research and treatment center
https://batemanhornecenter.org/removing-uncertainty-advance-cfs-research-dr-vernon-june-2019/

 

[Stretched]

@Stretched
If a lack of sleep,normal house chores or exercise won't make you worse,I higly doubt you have ME.
It must be something else then.

? These type activities absolutely make one worse - me included.

 

[Jyoti]

I can't emphasize enough how important it seems to me to tread very carefully around any discussion that suggests there might be an emotional cause for ME/CFS. We have all been victimized by the ease with which ignorant and helpless doctors toss us out of their offices with a suggestion to meditate or get some psychiatric help. Not having our physical reality acknowledged by a clueless medical profession is as old as....the medical profession.

With ME, I think we're all exceptions to the rules...and we don't even know what the rules are.

However, I feel that in MY case--and again, it is critical to say that we all have things in common and yet most of us have our own unique manifestation of illness--there is a connection to something akin to--but not anxiety. A physical manifestation of anxiety if you will

I believe, after studying myself for a number of years, that something failed (or got stuck) in my ANS, which had here-to-fore enabled me to manage stressful situations successfully. The cause of the failure/stuckness had nothing to do with my mental health and was entirely the result of physical stress on the body.

I had led a pretty intense life with many challenges and I rose to them. I could get pretty wired, but I was an expert at bringing myself down again when the peak had passed. After a stressful bout of pneumonia (no health insurance, free clinic doctor off-handedly telling me I didn't have pneumonia but lung cancer, then prescribing Cipro, etc.) that ability left me. I found that I could no longer regulate my nervous system. Even when settled down, the smallest thing in my environment or in myself (and it could be anything--emotional, physical, mental) produced exponentially expanded reactions. All the physical signs of panic---the sympathetic nervous system on HIGH. I started to wake spontaneously multiple times at night with surges of cortisol.

This is just part of my experience with ME, POTS and connective tissue disorder, but it feels important, salient to me. If I cannot rest, then I cannot recover. If small tasks loom like the Matterhorn to be climbed, there is a constant looping between body and mind telling me that I am unequal to my life. And that is stressful. A stress I think we all know--to contemplate a simple obligation and feel unable to meet it. To have to redefine your identity based on limits imposed by the body.

I know it is likely more complex than this, but

the HPA-axis / pituitary research publications outlining how its upregulation causes ongoing production of cortisol and adrenaline and their correlates which in turn manifests symptoms.

To call it anxiety is too simple in my opinion, but there is most definitely a connection in my body between the constant activation of the sympathetic nervous system and many of my symptoms.

 

[Wishful]

I don't feel stressed or anxious. I do recall a few stressful events that made me feel worse, but I'm not sure whether that was ME related. If the problem was as simple as stress, wouldn't chemical stress-relievers block it?

If extra cortisol is supposed to make us feel worse, why did prednisone give me full remission (temporarily) the first two times, and then have no effect the other two times I tried it?

I certainly accept that stress can make many diseases worse, but I haven't seen any evidence to convince me that it's the root cause of ME.

 

[Stretched]

Here’s an off-mainstream study out of Stanford Medical school which is insightful in considering some key factors leading up to developing MECFS. One might extrapolate causes. Also, it offers more favorable numbers
on prevalence worldwide and in the U.S.

ORIGINAL RESEARCH ARTICLE
Front. Pediatr., 05 February 2019 | https://doi.org/10.3389/fped.2019.00012
Onset Patterns and Course of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
Lily Chu*,

Ian J. Valencia,

Donn W. Garvert and Jose G. Montoya

• Stanford ME/CFS Initiative, Division of Infectious Diseases and Geographic Medicine, Stanford University School of Medicine, Stanford, CA, United States

 

[Wishful]

That paper contradicts your claim that ME is an ongoing manifestation of anxiety. Only 48% reported anxiety as a comorbid condition, and only 40% believed that stress was the trigger for their ME. A more likely explanation is that stress worsens the immune system, causing either more sensitivity to immune triggers or causes a more severe reaction from the immune system, and that it's something in the immune system (or rather, systems) that is part of what keeps us in this abnormal state.

 

[Stretched]

That paper contradicts your claim that ME is an ongoing manifestation of anxiety. Only 48% reported anxiety as a comorbid condition, and only 40% believed that stress was the trigger for their ME.

I read these numbers as large contingents, i.e. nearly half, dominant of all other views. There are other recent studies along these lines focusing down on the predominance of this perspective. Try Googling for more.

 

[Wishful]

Another way to look at those figures is that 64% listed infections (immune system activation) as the trigger for their ME, which is significantly more than half (and much more than 40%), and thus immune activation is dominant. You can't claim that stress is the dominant factor when it's quite clearly mathematically not dominant.

 

[Stretched]

I can't emphasize enough how important it seems to me to tread very carefully around any discussion that suggests there might be an emotional cause for ME/CFS. We have all been victimized by the ease with which ignorant and helpless doctors toss us out of their offices with a suggestion to meditate or get some psychiatric help. Not having our physical reality acknowledged by a clueless medical profession is as old as....the medical profession.

You’re so right! This is a real conundrum that may only be reversed by finding a bio marker, usually available for other invisible diseases. There is a report this past year in JAMA proclaiming a device that may illucidate CFS. It measures a salt differential on the skin, like a lie detector. It doesn’t look ready for prime time =&

You can read or listen to a related parliamentarian debate on This subject and MECFS and treatments here;

The complete Ministerial response from the Parliamentary debate on M.E. treatment and research in Westminster Hall | 22 June 2018
https://www.meassociation.org.uk/20...nd-research-in-westminster-hall-22-june-2018/

In live debate, MP calls treatment of ME patients “one of the biggest medical scandals of the 21st century”
by Brooke, medium.com
February 24, 2018 05:17 PM

IN THE LAB
Patients push limits for clues to chronic fatigue syndrome
https://www.statnews.com/2020/01/08/patients-push-limits-for-clues-to-chronic-fatigue-syndrome/

 

[Stretched]

Another way to look at those figures is that 64% listed infections (immune system activation) as the trigger for their ME, which is significantly more than half (and much more than 40%), and thus immune activation is dominant. You can't claim that stress is the dominant factor when it's quite clearly mathematically not dominant.

Infections are not mutually exclusive. They can coexist, and likely do!

Please feel free to state some other or contrary opinion. I’m not disposed to defend every wrinkle of an unproven hypothesis but willing to offer support for it based on research to date AND personal experience and study.

 

[Stretched]

If extra cortisol is supposed to make us feel worse, why did prednisone give me full remission (temporarily) the first two times, and then have no effect the other two times I tried it?

See ‘mast cell’ reference above, and it’s biolography re Dr. Theohadres’ work (for additional articles). He’s MDPhD and has 400+ papers. (BTW, prednisone abates my PEM, too. There’s a long discussion about this dynamic here on PR.)