Fibromyalgia Fertile Flora

Having suffered more than usual with tummy issues for the past 8 weeks, I thought I would share this blog post from Ken Lassesen, writing for Health Rising:

(Ken Lassesen has recovered three times from chronic fatigue syndrome (ME/CFS).  In his gut series on ME/CFS/FM he provides his personal prescription for better health through gut flora manipulation. Please note that Ken is a patient, not a doctor; these blogs are for informational purposes only. Please consult with your physician before making changes to your treatment regimen. )

Fertile Flora: The Gut Microbiome and the Infection Connection in Chronic Fatigue Syndrome and Fibromyalgia

Before we look at correcting the microbiome, we should understand better what we are striving to do and why.

Our fertile (or not so fertile) flora may have impacts far beyond the gut itself

Our fertile (or not so fertile) flora may have impacts far beyond the gut itself

Microbiome is the fancy new name for the gut and other bacterial systems that keeps us alive.  All microbiomes are not the same — in fact, the microbiome you have is connected strongly with your DNA and is actually more unique than your DNA. A recent study of identical twins found that they can be told apart by their microbiome and not by their DNA.

You have around 100 trillion bacteria according to a recent New York Times article which states:

Our resident microbes also appear to play a critical role in training and modulating our immune system, helping it to accurately distinguish between friend and foe and not go nuts on, well, nuts and all sorts of other potential allergens. Some researchers believe that the alarming increase in autoimmune diseases in the West may owe to a disruption in the ancient relationship between our bodies and their “old friends” — the microbial symbionts with whom we co-evolved.

Microbiome Under Attack?

Modern times with our poor diets, low use of fermented foods and high antibiotic use have not been good for our gut flora

Modern times with our poor diets, low use of fermented foods and high antibiotic use have not been good for our gut flora

Modern times have not been good for our gut flora. Our modern high carbohydrate and fat diets have been shown to negatively affect the gut microbiome but for increasing numbers of us the negative impact to our gut flora began long before junior had his first french fries.  Research indicates mothers actually pass important parts of their microbiome to their children as they move through the birth canal. Some researchers believe the higher rates of C-sections in the modern era maybe inadvertently contributing to the higher rates of allergy, asthma and autoimmune problems present.

Frequent antibiotic use may have snuffed out some good gut flora in many of us. Nor do we eat the array of probiotic saturated fermented foods our ancestors did.  Given all that it’s no surprise that the diversity of our gut flora compares poorly with those living in more traditional societies with their healthier, more varied diets and reduced C-section and  antibiotic use rates.

Micro in Name Only: Little Bugs With Big Impact

There is already abundant evidence that microflora can have system-wide effects and influence immune responses, brain development and behaviour (Williams, Hornig and Lipkin et. al).

Researchers are still figuring out how important gut flora is to our health but studies suggest the state of our gut can impact many areas, some of which are listed below:

  • inflammatory gastrointestinal disease – reduced levels of a helpful bacteria appear to set the stage for Crohn’s disease
  • cognition – specific bacterial families are associated with poor cognition and inflammation
  • obesity – certain bacteria that metabolize food more completely may increase the risk of obesity/weight) B12 levels (Lactobacillus Reuteri produces most of it)
  • autism – people with autism appear to have a unique gastrointestinal flora that has less variety than healthy individuals.

Autism provides an intriguing example of a dysfunctional gut (increased intestinal permeability, aberrant immune profiles, etc.)  possibly contributing to severe cognitive and emotional dysfunction. Hornig and Lipkin’s Center for Infection and Immunity recently published a study suggesting reduced levels of carbohydrate digesting enzymes may lead to high carbohydrate levels that foster the growth of unhealthy bacteria.  Indeed, RNA sequencing indicated an abnormal gut flora was present (decreased levels of Bacteroidetes, increased Firmicute/Bacteroidete ratio,  Firmicutes and Proteobacteria, and increased Betaproteobacteria.)

A CFIDS Association of America pilot study recently found greatly increased ratios of Firmicute/Bacteriodetes bacteria before and after exercise in ME/CFS. People with ME/CFS also may have deficits in the bacteria that produce B-vitamins in our guts.) These researchers believe changes like these could affect immune functioning, brain development and behaviour.

The Infection Connection

Could an infection have altered the gut flora permanently for some people with ME/CFS?

Could an infection have altered the gut flora permanently for some people with ME/CFS?

It turns out that most infections do temporarily change the microbiome which usually reverts to normal after the infection has passed. In approximately 4-8% of cases, though, this fails to happen and the microbiome remains in a new stable state.

That percentage is pretty close to the percentage of people who come down with a CFS-like state after flu-like infections. Researchers have examined immune, autonomic, endocrine functioning in people with ME:/CFS at the start of infection and afterwards with marginal success. Thus far, immune upregulation and increased symptoms during the early course of an infection and autonomic variables later on are the only unique factors found in people with infections who come down with ME/CFS.

No one yet, however, has examined the most immune-rich substrate of all – the gut. I propose that an infection induced change of gut microflora – which do not revert to normal – plays a key role in chronic fatigue syndrome.

Your Microbiome is Unique to you — and So May Be Your ME/CFS/FM

If my hypothesis on the cause of ME/CFS/FM is correct (a stable dysfunction of your microbiome) then every patient will have a different variation of their unique microbiome! This means that your symptoms will be slightly different because your dysfunctional bacteria are slightly different. This actually goes one step further, the signalling chemicals from these bacteria interact uniquely with your DNA.

Getting a good idea of your gut composition, however, is difficult. Unfortunately currently available medical tests only characterize a small percentage of the species in our gut. Tests done at academic centres (not available at commercial labs) using PCR and DNA fragments are more accurate. Furthermore, many species (~ 80%) cannot be kept alive outside of the body which makes study very difficult.

A good review is at Aging of the Human Metaorganism: the Microbial Counterpart from which the diagram below comes from.

Commercial labs test for less than 2% of the bacterial strains present in our gut.

Commercial labs test for less than 2% of the bacterial strains present in our gut.

Altering Gut Flora: More Art Than Science

That means there’s more art to changing the gut flora than science.

On the plus side, it appears very possible – by effectively declaring war against the offending bacteria – and then aggressively repopulating it with good ones, to alter the gut flora. The disruption is not easy — before the arrival of antibiotics- a reset of the gut flora often began by inducing a gut infection (often cholera) to clear the slate, so to speak. Asking a MD to infect you  with cholera to treat CFS today , of course, would be met with complete disbelief ; at one time, it was conventional medical practice and was reportedly successful. (Then again who would have thought we’d be talking about faecal transplants or using worms to alter gut flora….)

To me, any change is better than resignation to the current state of health in CFS. The key items are:

  • Killing off bad species (may have collateral damage on the good species) – antibiotics, herbs, spices
  • Feeding the good species (so they start to dominate) – prebiotics, often FOS, but there are other things
  • Disruption of the new stability (so the old ones have a fighting chance)
  • Importing good species (a.k.a. probiotics of the appropriate type, fermented foods, raw milk and faecal transplants)
  • Starving the bad species (so there are less of them) – no gluten and no sugar diets are likely doing this

I believe the following approaches have the right general approach but may lack the fine-tuning needed for ME/CFS and other disorders. Early reports suggest that ME/CFS patients, for instance, may have a major drop in all E.Coli species but in Crohn’s Disease over 95% of the invasive species are E.Coli. With one, you want to encourage (healthy) E.Coli; with the other, you want to kill off (unhealthy) E.Coli — one treatment plan does not suit all conditions.

These approaches below are correct, I believe, that we should attempt to enhance our gut flora — but they have not evolved enough to address specific gut dysfunctions:

If you are doing any of the above,  I suggest that you keep doing them but consider adding a few modifications which I will be suggesting in my following posts that are specific to the microbiome shift that may be occurring in CFS (which is likely similar to that seen with IBS).

I have yet to see any reports of the above consistently resulting in remission of CFS  but I have seen reports of symptoms reduction. I believe they are likely part of the solution but are insufficient in themselves.

Ken Lassesen has a plan…

Ken Lassesen has a plan…

In his future posts, Ken will share his current understanding and experience in being an anarchist against this dysfunctional microbiome.

When Words Fail…

Do you find yourself searching your brain for simple words that you can’t remember? I know I do (that’s why I can’t be a lawyer anymore!) Do you have problems writing or understanding language? I know I do (that’s another reason why I can’t be a lawyer anymore!)

You are not alone!

119. fibro fogLanguage impairment is a symptom of FM. It’s part of what we talk about when we refer to  “fibro fog” or brain fog.

There is no evidence that our language impairment is tied to known disorders, but it is similar to those associated with a speech disorder called dysphasia (or aphasia if it’s severe.) Some FM research shows a specific delay in name recall, similar to nominal dysphasia, which involves nouns.

Researchers don’t yet know why people with FM may have language impairment. Dysphasia and aphasia are generally linked to brain injury or degeneration, such as from a stroke. However, we don’t have evidence that FM can cause this type of degeneration.

Experts have several theories about possible contributing factors:

  • Lack of restorative sleep
  • Abnormal cranial blood flow or volume
  • Brain abnormalities
  • Premature brain aging
  • Mental distraction due to pain

Language problems can cause frustration and embarrassment. They tend to be unpredictable and can disrupt conversation at any time. They’re often worse when we’re under stress.

When you can’t communicate effectively, it can be hard to maintain relationships or hold down a job. Sometimes, people may think we’re drunk, disoriented, or just not very smart. It’s possible to become fearful of communication, and the anxiety that causes can make the problem worse. It’s important to manage your stress levels and learn to stay calm when your brain falters.

imageFinding effective ways to cope with language impairment can help relieve some of the emotional and social impact. For example, if you find it’s easier to write than speak, you might have an easier time communicating via email or text whenever possible.

Make sure the people closest to you understand this symptom so they can be patient or help you out when you’re struggling to find a word. At work, you can request reasonable accommodation, such as getting instructions in writing instead of verbally.

Brain fog symptoms generally improve when pain and fatigue levels are well-treated. However, not everyone can find effective treatments, which leaves many of us trying to manage brain fog.

Supplements are a common choice. While we don’t have a lot of evidence to support their effectiveness, some doctors and people with these conditions say they’ve seen supplements help with cognitive function. Common brain-fog supplements include:

  • 5-HTP
  • B vitamins
  • Carnitine
  • Choline
  • Omega-3 (Fish Oil)
  • Rhodiola
  • St. John’s Wort
  • SAM-e
  • Theanine

Some doctors recommend dietary changes to include “brain friendly” foods, some of which are natural sources of the supplements listed above. Some of these foods are:

  • Fish (Omega-3)
  • Canola or walnut oil (Omega-3)
  • Eggs (Choline)
  • Fruits & vegetables
  • Carbohydrates

Some FM research shows that moderate exercise can help improve cognitive function as well.

tumblr_m73vr4Ja4g1rvsbn1o1_500

 

We Cope, Not Hope (results)

Disease as an adverse interruption of life is the prevalent interpretation of chronic pain conditions. But there are different ways to cope with pain, and there are different ways to regulate emotions associated with chronic diseases. Because most patients with chronic conditions are unable to ‘solve’ our persisting pain by ourselves (in terms of recovery or repair) and to find distance to negative emotions associated with pain, we have to find strategies to adapt to a long-lasting course of illness.

We have to find ways to maintain physical, emotional and spiritual health in spite of often long-lasting courses. Thus, our coping with chronic pain is an ongoing process which includes appraisals of stress, cognitive, behavioural, and emotional coping responses, and subsequent reappraisals of stress.

One of the most frequently used concept on adaptation strategies for patients with chronic pain diseases differentiates active and passive coping:

  • Active coping (i.e., problem solving, including collecting information and refocusing on the problem, or regulation of emotion by focusing attention on the emotional response aroused by the stressor) is associated with less pain, less depression, less functional impairment, and higher general self-efficacy;
  • Passive coping (i.e., avoidance and escape) is correlated with reports of greater depression, greater pain and flare-up activity, greater functional impairment, and lower general self-efficacy.

Although the importance of decreasing maladaptive and encouraging adaptive coping responses is emphasized by innovative treatment programs for chronic pain (if you can get in!), one nevertheless has to ask which adaptive coping strategies were of relevance for the patients.

I asked the same question of you: Which of the following coping strategies best describes the way you cope with your chronic pain?

The answers (so you don’t have to return to the poll) were:

  • Trust in Divine Help in response to disease addresses non-organized intrinsic religiosity as an external transcendent resource to cope (i.e., trust in a higher power which carries through; strong belief that God will help; faith is a strong hold, even in hard times; pray to become healthy again; live in accordance with religious convictions).
  • Trust in Medical Help addresses patients’ reliance on an external medical source of health control (i.e., trust in the therapeutic potentials of modern medicine, take prescribed medication, follow advice of medical practitioners, full confidence in doctors and therapists).
  • Search for Information and Alternative Help refers to external sources providing additional information or alternative help (i.e., thoroughly informed about disease; get thorough information how to become healthy again; find people who can help; search for alternative ways of healing).
  • Conscious Way of Living addresses cognitive and behavioural strategies in terms of internal powers and virtues (i.e., healthy diet; physical fitness; living consciously; keep away harmful influences; change life to get well).
  • Positive Attitudes refers to internal cognitive and behavioural strategies (i.e., realization of shelved dreams and wishes; resolving cumbering situations of the past; take life in own hands; doing all that what pleases; positive thinking; avoiding thinking at illness).
  • Reappraisal: Illness as Chance addresses a reappraisal attitude referring to cognitive processes of life reflection (i.e., reflect on what is essential in life; illness has meaning; illness as a chance for development; appreciation of life because of illness).
  • Escape from illness (i.e., fear what illness will bring; would like to run away from illness; when I wake up, I don’t know how to face the day)

The study, which started all of this, had 579 participants – we had 239 (not too bad). The study also asked demographic type questions but I decided not to make it too long a poll so we could have more answers.

From highest reliance to lowest here are the results from both the study and our poll:

results

We (as a group) seem to be much more aggressive, active participants in the search for sufficient condition management.

coping

Most study patients tended to externalize the process of disease management, i.e., the chronic pain disease was regarded as an adverse interruption of life, and patients called experts for help (i.e., medical doctors or therapists), and followed their advice or relied on the effects of prescribed remedies, which alone is a rather passive strategy. However, if you add (internal) cognitive-behavioural changes (i.e., patients may change distinct aspects of their life, try to become more consciously, healthy, physically fit, use distinct diets etc) or try to think positive (resolve cumbering situations of past, realize shelved dreams and wishes etc.) – both are active strategies.

In face of an insufficient manageability of chronic pain, some patients may call upon ‘more powerful’ external others (i.e., Trust in Divine Help), because the conventional resources of help seem to be (subjectively) exhausted.

In general, both groups relied on external powerful sources to control their disease (i.e., Trust in Medical Help; Search for Information and Alternative Help), but also on internal powers and virtues (i.e., Conscious Way of Living; Positive Attitudes).

In contrast, Trust in Divine Help as an external transcendent source and Reappraisal: Illness as Chance as an internal (cognitive) strategy were valued moderately.

Escape from Illness (which is not regarded as an adaptive coping strategy) was highly associated with depressive disorders.

The researchers came to the conclusion that to restore a sense of self-control over pain as well as the conviction that you are not necessarily disabled by disease and that pain is not necessarily a sign of damage is a major task in patient care. Changing negative/maladaptive illness interpretations and depressive or avoidance coping by means of an intervention and encouraging social support by means of patient support groups may at least improve quality of life.

Apart from effective pain management, a comprehensive approach is needed which enhances the psycho-spiritual well-being, i.e. self-awareness, coping and adjusting effectively with stress, relationships, sense of faith, sense of empowerment and confidence, and living with meaning and hope.

Further studies are required (of course!), particularly longitudinal studies to measure changes in the weighting of adaptive coping strategies and interpretations of disease with respect to pain intensity, and comprehensive intervention programs.

lrg_Ornamental_Divider__Englische_Linie

F.Y.I. – The utilization of the different adaptive coping strategies did not significantly differ with respect to gender, while the educational level had a small impact on Trust in Medical Help, which was the highest in patients with a lower educational level. Age had a significant impact on Trust in Divine Help, Trust in Medical Help and Conscious Way of Living. The duration of the condition had no significant impact on the adaptive coping strategies.

An obvious result showed that patients from the outpatient clinic had significantly higher scores for Trust in Medical Help and Escape from Illness than patients from the rehabilitation clinic or patients attending the mind-body program, and were also in Search for Information and Alternative Help. This may indicate higher need for external help.

 

Coping vs Hoping

In response to a research study I found, I wanted to ask you guys the same question – to see if our results match the study. The answers may need explanation; and you will find then below the poll.

After we have answers, I will publish a precis of the research study as compared to our answers

  • Trust in Divine Help in response to disease addresses non-organized intrinsic religiosity as an external transcendent resource to cope (i.e., trust in a higher power which carries through; strong belief that God will help; faith is a strong hold, even in hard times; pray to become healthy again; live in accordance with religious convictions).
  • Trust in Medical Help addresses patients’ reliance on an external medical source of health control (i.e., trust in the therapeutic potentials of modern medicine, take prescribed medications, follows advice of health professionals, full confidence in doctors and therapists).
  • Search for Information and Alternative Help refers to external sources providing additional information or alternative help (i.e., thoroughly informed about disease; get thorough information how to become healthy again; find people who can help; search for alternative ways of healing).
  • Conscious Way of Living addresses cognitive and behavioural strategies in terms of internal powers and virtues (i.e., healthy diet; physical fitness; living consciously; keep away harmful influences; change life to get well).
  • Positive Attitudes refers to internal cognitive and behavioural strategies (i.e., realization of shelved dreams and wishes; resolving cumbering situations of the past; take life in own hands; doing all that what pleases; positive thinking; avoiding thinking at illness).
  • Reappraisal: Illness as Chance addresses a reappraisal attitude referring to cognitive processes of life reflection (i.e., reflect on what is essential in life; illness has meaning; illness as a chance for development; appreciation of life because of illness).
  • Escape from Illness (i.e., fear what illness will bring; would like to run away from illness; when I wake up, I don’t know how to face the day”