Functional Medicine, Fatigue, and ME/CFS

[AngelM]

I am confused. In my ongoing attempt to find a new CFS doctor, I contacted a person who is well-versed in integrative medicine and its practitioners. She said “What you need is a Functional Medicine Clinic.”

My first reaction was “Wow, a new name for integrative medicine.” But once I had some time to think about it, I realized that, at least in my experience, “functional” has always been a polite way of describing my ME/CFS as not real, but imagined. Now I don’t know what to think. What exactly is “functional medicine”?

Linguistics is important because of the influence one word can have on the universal perception of a name, title, or designaation. A good example is ME/CFS where the word “fatigue” is believed by the majority of the English-speaking population to be nothing more than a synonym for “tired.” I can see the word “functional” only adding to the misinformation that surrounds this disorder.

 

[alex3619]

Look up functional medicine, its an old and well developed area. It is about determining how a body functions and treating that. Sadly it will be decades before its a mature medical discipline, and is likely to be overshadowed by personalised medicine. The term functional when used in psychiatric medicine is a different use of the word.

 

[wabi-sabi]

You can take a look at www.ifm.org for a full description. That's the main functional medicine website and educational organization. Functional people are mostly practitioners that are trained in a western biomedical model, such as an MD, PA, or NP, but felt they needed more tools to help patients than that model provides. I think it is an outgrowth of the integrative medicine that started around the 1970s and has Dr Weil of Arizona as one of its more famous proponents. (I could be wrong on that history of medicine aspect though).

At any rate, functional people look for what they call a "root cause" for medical conditions. As such they do an extremely thorough history and physical to determine it, much more so than a conventional MD is able to do in a typical 15 minute appointment. That's one of the reasons that functional medicine is so popular. Taking time with people makes them feel cared for. But, I'm not sure if a functional person can fix ME/CFS. My feeling is that ME/CFS is such a complicated disease that you are going to need something like Dr Klimas has- computational biologists crunching patient data numbers in huge computers. That's not functional medicine's approach. Fundamentally, I don't think ME/CFS HAS a root cause. I think it a systems analysis problem.

@alex3619 is quite right about the term functional in other areas of medicine, such as calling IBS a functional disorder. It means that the anatomy looks correct, but the system isn't working/functioning properly. Makes it much harder to fix that way! It also makes it much easier to write off as psychosomatic.

 

[AngelM]

Look up functional medicine, its an old and well developed area. It is about determining how a body functions and treating that. Sadly it will be decades before its a mature medical discipline, and is likely to be overshadowed by personalised medicine. The term functional when used in psychiatric medicine is a different use of the word.

Thank you for taking the time to explain. I suppose the word "functional" as in psychiatric puzzled me. That is where you most often hear the term. I have a genetic heart murmur that is referred to as "functional." I understand that in the case of my heart murmur, "functional" means the murmur exists, but does not affect my health. Another word that is confusing is "idiopathic," which I think has close to the same meaning as "functional." If an illness is idiopathic, is it recognized as a real illness with only its origin in question?

 

[pamojja]

I understand that in the case of my heart murmur, "functional" means the murmur exists, but does not affect my health. Another word that is confusing is "idiopathic," which I think has close to the same meaning as "functional." If an illness is idiopathic, is it recognized as a real illness with only its origin in question?

These definitions don't apply to functional medicine at all, which - as already said - is just looking at all bodily systems, and if there is dysfunction in a subsystem - which could be gut-related, liver, kidney, etc, etc - they try to fix those first, since all these sub-system could be factoring in to the causes for whatever you're diagnosed for.

 

[pattismith]

Thank you for taking the time to explain. I suppose the word "functional" as in psychiatric puzzled me. That is where you most often hear the term. I have a genetic heart murmur that is referred to as "functional." I understand that in the case of my heart murmur, "functional" means the murmur exists, but does not affect my health. Another word that is confusing is "idiopathic," which I think has close to the same meaning as "functional." If an illness is idiopathic, is it recognized as a real illness with only its origin in question?

idiopathic is very often used in veterinary medecine, it just mean that we don't know yet the cause (but veterinary medecine may be more lowly than human )

 

[alex3619]

Idiopathic just means of unknown cause. Its a failure to diagnose. Its often a recognised problem, but the diagnostic methods are not working. If a better diagnosis comes along then the idiopathic label goes away.

 

[FMMM1]

I am confused. In my ongoing attempt to find a new CFS doctor, I contacted a person who is well-versed in integrative medicine and its practitioners. She said “What you need is a Functional Medicine Clinic.”

My first reaction was “Wow, a new name for integrative medicine.” But once I had some time to think about it, I realized that, at least in my experience, “functional” has always been a polite way of describing my ME/CFS as not real, but imagined. Now I don’t know what to think. What exactly is “functional medicine”?

Linguistics is important because of the influence one word can have on the universal perception of a name, title, or designaation. A good example is ME/CFS where the word “fatigue” is believed by the majority of the English-speaking population to be nothing more than a synonym for “tired.” I can see the word “functional” only adding to the misinformation that surrounds this disorder.

Jen Brea, in the film unrest/TED talk, deals with this. From memory Jen describes it as hysteria and it has a long history. It's generally applied to women/diseases which predominantly affect women.

Jen says that "I don't know" would be a better approach i.e. for medical practitioners to adopt. I use a brain training program which requires you to select the single smiling face from the multiple frowning faces. I suggest something similar i.e. selecting science (from those like Ron Davis) rather than the functional medicine brigade.

I live in part of the United Kingdom (UK). The UK Government has funded functional medicine (PACE etc.) and, to a very limited extent, scientific research (e.g. “Cellular bioenergetics is impaired in patients with chronic fatigue syndrome - Cara Tomas - https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0186802). The study by Cara Tomas used the Seahorse analyser. At the 2018 Invest in ME Conference Ron Davis presented data which showed that by adding salt to cells (stressing cells) and then measuring cellular respiration (Seahorse) differentiates people with ME/CFS from healthy controls. I.e. there are differences in cellular respiration in ME/CFS. How does functional medicine explain that finding?

Maybe the answer for us (i.e. those with ME/CFS or family members) to lobby for a diagnostic test. There are some promising technologies [e.g. Seahorse/nano needle (https://www.omf.ngo/2018/08/22/rahim-esfandyarpour/)]. Possibly the folks who could fund this are America (NIH) or European Union (Horizon 2020 and follow-up). Anyone in European Union who knows an interested member of the European Parliament?

 

[AngelM]

@FMMM1
Thank you for taking the time to share that information with me. I cannot believe that a disorder as complex as ME/CFIDS could get even more complicated as it slowly begins to be recognized. Twenty years ago CFS and Fibromyalgia were lumped together; both considered hysterical women’s diseases. Now Fibromyalgia seems to have been fully recognized by physicians as an illness, where ME/CFS continues to be the orphan. I am yet to find a doctor who will even discuss it with me. I suppose the problem is that there are no known cures for ME/CFS, where drugs have been discovered for Fibromyalgia.

Would you say that Davis and Navaiux (sp?) have made the most progress in the search for a ME/CFID

 

[FMMM1]

@FMMM1
Thank you for taking the time to share that information with me. I cannot believe that a disorder as complex as ME/CFIDS could get even more complicated as it slowly begins to be recognized. Twenty years ago CFS and Fibromyalgia were lumped together; both considered hysterical women’s diseases. Now Fibromyalgia seems to have been fully recognized by physicians as an illness, where ME/CFS continues to be the orphan. I am yet to find a doctor who will even discuss it with me. I suppose the problem is that there are no known cures for ME/CFS, where drugs have been discovered for Fibromyalgia.

Would you say that Davis and Navaiux (sp?) have made the most progress in the search for a ME/CFID

Mark Davis said, at the OMF Community Symposium (September 2017), that the immune system is getting simpler i.e. as we understand more. alex3619 said that we don't understand type 2 diabetes but you can treat it/live with it.

Your post also had an effect on me i.e. to request a Member of the European Parliament (Alex Mayer - MEP) to ask a parliamentary question on funding the development of a biological diagnostic test for ME/CFS [see question below*]. Alex asked the only previous question [Google - E-006901/2017 - Funding of research on ME/CFS]. The budget for Horizon 2020 [European Union (EU) Science Research Fund] is €77 billion over the period 2014-20. To date ME/CFS has got zero funding from Horizon 2020 (response to Alex's question). The EU has funded the development of a diagnostic test for Lyme disease -----. Anyone want to try their Member of the European Parliament/Congress Representative ----?

Regarding Navaiux and (Ron) Davis. I think the intriguing thing about Navaiux's research is that he seems to be suggesting that there's an underlying metabolic default i.e. you switch to a low energy state. Intriguingly Ron Davis presented data from a gene expression study (at the 2018 Invest in ME Conference) showing that ME/CFS most closely resembles sleeping sickness. Navaiux has long wanted to try the sleeping sickness drug (suramin) in ME/CFS. Ron Davis said that suramin should be available in 2019 [https://www.omf.ngo/2018/02/06/omf-newsletter-winter-2018/]. Don't know if the logistics (money etc.) are in place to do a trial of suramin in ME/CFS; maybe we'll hear at the OMF Conference i.e. end of this month.
Phair is trying to unpick the underlying metabolic default and could potentially find a way of resetting your system. Fluge and Mella found that the metabolic fault tracks with the plasma i.e. ME/CFS cells + healthy plasma = no problem (and the reverse). As Ron Davis says the system may be fine i.e. if you can re-set it.
Many other scientists have made a significant contribution Chris Armstrong (2015 - metabolomics study ---); Nakatomi (neuroinflammation - PET scan); Hornig/Lipkin/Mark Davis (inflammation/immune); Bergquist/Baraniuk (proteomics ---); Hanson (gut bacteria ---); there are too many to name.

I think a diagnostic test would help. Ron Davis said that “It takes a village to solve a disease". What part can we i.e. those affected/with members of their families affected/others play? Lobby to get funding to develop diagnostic tests/treatments?


*Draft European Parliament Question:
“There are approximately 1 million women in the European Union who have ME/CFS. Many are unable to lead normal lives e.g. to study/work or otherwise participate normally in society.
Currently there is no biology based diagnostic test for ME/CFS and many women with ME/CFS find themselves labelled as having a functional disorder/hysteria.
Ron Davis (Stanford University) recently presented data showing biological based methods which separate people with ME/CFS from healthy controls [Invest in ME Conference - London 2018]. These methods could be the basis of a biological diagnostic test for ME/CFS and provide the impetus for research to understand the disease and treatments.

Will the Commission investigate the currently available biological based methods which separate people with ME/CFS from healthy controls and consider funding the development of a biological based diagnostic test for ME/CFS?"