It was about 26 years ago when I was first told by an endocrinologist that I had Chronic Fatigue Syndrome (CFS) or Myalgic Encephalomyelitis (ME). At that time I had symptoms of both hypothyroidism and hypocortisolism. However, the CFS/ME diagnosis went on my medical records and it became one of the reasons why no other endocrinologist or doctor would put much effort into helping me find out exactly why I was so ill and incapacitated. It was just to easy for them to say, “Well, I am afraid that you have CFS and there is not a lot I can do for you!”
I was very fit and healthy until I developed Hashimoto’s thyroiditis and found out that my thyroid gland had all but been destroyed by it. The treatment with thyroxine (T4) failed to fix my symptoms. So, I found it very difficult to believe that another condition (CFS or ME) had sneakily crept up on me and caused a similar set of symptoms to the thyroid ones.
Once I realised that I was not going to receive the necessary open-minded investigative work from any of the doctors or endocrinologists I had seen, I started to do my own research. It was around that time, about 25 years ago, that I started to see the connections between the thyroid hormones, the hypothalamic-pituitary system and the tropic hormones it produces (like the adrenocorticotropic hormone – ACTH), and the symptoms of low FT3, low cortisol and the symptoms of CFS/ME.
The understanding that I gained back then allowed me to develop an approach that helped me to resolve both thyroid hormone balance, a sluggish hypothalamic-pituitary system and low cortisol, i.e. the wide range of symptoms that I had.
In my case, this approach completely resolved my CFS/ME symptoms. The same essential approach has now helped thousands of other patients.
I actually believe that ultimately several underlying causes for CFS/ME will be discovered – not just one single cause or one silver bullet fix. The symptoms of CFS/ME are so broad that finding one simple single solution appears unlikely to me. However, it does seem likely that a large cohort of CFS/ME patients will have hypothalamic-pituitary system involvement as a fundamental issue, and some patients will have thyroid, cortisol and other hormone issues.
However, the paper to which I am about to give you the link goes way beyond my own ideas. The authors propose a novel hypothesis to explain CFS/ME by drawing on the research from critical care medicine. The authors propose that maladaptive mechanisms underlie CFS/ME. In their own words, they believe that these mechanisms are: “(a) suppression of the pituitary gland’s pulsatile secretion of tropic hormones, and (b) a “vicious circle” between inflammation, oxidative and nitrosative stress (O&NS), and low thyroid hormone function.”
The authors propose that their hypothesis should be investigated through collaborative research projects. The interesting way that the authors have arrived at their hypothesis was to analyse the connections and similarities between patients with CFS/ME and chronic (or ‘prolonged’) intensive care unit patients.
This is a very important area for CFS/ME patients but also for the thyroid patient and low cortisol community. I believe that if the research that the authors propose can be done, the understanding that comes from this will benefit all these patient classes.
The paper is definitely worth a read. It fits everything I have read, experienced and witnessed over the past 32 years of living with hypothyroidism, and hypothalamic-pituitary issues that affect end hormones like cortisol.
Anyway, here is the information on the paper:
“Mechanisms That Prevent Recovery in Prolonged ICU Patients Also Underlie Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)”
Dominic Stanculescu, Lars Larsson, Jonas Bergquist (2020).
Frontiers in Medicine, 28 January 2021.
https://www.frontiersin.org/articles/10.3389/fmed.2021.628029/full
This is a follow-up paper from the same authors that proposes potential treatments for ME/CFS based on the analysis of effective treatments in prolonged ICU patients:
“Theory: Treatments for Prolonged ICU Patients May Provide New Therapeutic Avenues for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)”
Dominic Stanculescu, Lars Larsson, Jonas Bergquist (2020).
Frontiers in Medicine, 7 May 2021.
https://www.frontiersin.org/articles/10.3389/fmed.2021.672370/full
Here is another follow-up paper on the same topic:
“Perspective: Drawing on Findings From Critical Illness to Explain Myalgic Encephalomyelitis/Chronic Fatigue Syndrome”
Dominic Stanculescu, Jonas Bergquist (2022).
Frontiers in Medicine, 8 March 2022.
https://doi.org/10.3389/fmed.2022.818728
Best wishes,
Paul
WOW, incredible publication and one that any practitioner should be able to pay attention to. I’m printing it out to take to my next visit with my non-believer doctor!
Thanks Shelley! Good luck with the doctor!
It is far too easy for doctors to hand out a CFS or ME label and then not have to investigate underlying issues.
This happened to me for years with my CFS/ME ‘diagnosis.
Best wishes, Paul