Help for People with CFS and ME
A tragic news story about a young woman who died at home caught my attention this week. The assistant coroner for Exeter, Plymouth, South Devon and Torbay reported that a young woman aged 27 from Exeter died from natural causes “because of severe myalgic encephalomyelitis (ME).” This struck a chord with me because I see patients all the time with varying degrees of chronic fatigue and ME. I have also had and recovered from ME myself. Therefore, I know something can be done about this potentially life-destroying condition. This article outlines what can and should be done for CFS/ME patients.
Let’s start with the definitions of the condition:
Chronic Fatigue Syndrome (CFS) - includes anything that lowers the energy delivery mechanisms of the body. This can manifest in physical, mental and emotional tiredness. Some examples of purely fatigue-causing conditions include: hypothyroidism, heart failure and food allergy.
Myalgic Encephalomyelitis (ME) - this is chronic fatigue plus inflammation and immune activation. This is most often due to chronic infection, allergy, autoimmunity or, as I sometimes see in clinic, all three. When the immune system is kept busy fighting chronic infections, symptoms affect multiple body systems and can be very unpleasant indeed e.g. low cardiac output, though this is not labeled heart failure in ME patients. However, the effect on energy is still the same. ME often starts with an earlier CFS condition. When energy is low, this affects the immune system, which then allows viruses to reactivate and makes the individual more susceptible to acquiring new infections.
Both CFS and ME symptoms can range from debilitating to severe. Common symptoms include: extreme fatigue, brain fog, poor exercise recovery, sleep issues and inability to lead a normal life. As one medical professional once said to me, ME is an illness where patients can seem sicker and more fatigued than many cancer patients.
Yet, many find little understanding or sympathy when they visit their GP. Instead, many find themselves disbelieved or worse, shunted off to psychiatric services as it is “all in their head.” Nothing could be further from the truth as CFS/ME has real physical causes affecting real physical energy delivery mechanisms to the body. Furthermore, getting a wrong indication from a doctor causes the patient a great deal of upset which, all by itself, can trigger a worsening of symptoms.
CFS/ME is not an area of medicine that the NHS does well. The assistant coroner in the above case said she had read 6,400 pages of evidence and did not find any of the clinicians who had treated this young lady believed that ME was a 'true illness.’ She expressed the hope that important lessons will be learned from this young woman’s death. Unfortunately, this scenario is typical of the experiences of individuals who come to see me.
Lack of understanding and awareness of CFS/ME on the part of the NHS stems partly from the current NHS disease model which consists of suppressing symptoms with drug treatments. Compounding the problem is that the label CFS/ME is a clinical picture, not a diagnosis in itself. To get an actual diagnosis, one must ask the questions ‘Why are the symptoms present? What mechanisms are currently driving the symptoms? What caused the condition in the first place?’ This involves detective work on the part of the practitioner by sitting down with the patient and doing a thorough case history. Unfortunately, GPs just don’t have the time to do do this in their 15 minute appointment slots. They can only deal with one symptom-one appointment, which is totally inadequate. This disadvantages the patient hugely because if the underlying causes of the condition are not found and addressed, the condition will keep coming back no matter what treatments are given.
Typically CFS/ME is triggered by a viral infection.
My own CFS/ME started with a virus in 1979 when I was an undergraduate studying at Oxford University. One morning I work up completely congested and unable to focus my eyes due to persistent vertigo. Persistent fatigue made it difficult to get through the heavy schedule of academic work. Having the room spinning round uncontrollably added to the stress. Despite having an abnormally high white blood cell count signifying acute infection, my college doctor accused me of malingering and his line of questioning was clearly focused on shunting me off down the psychiatric route. Indeed, I wondered at the time whether he even had some sort of grudge against women students at Oxford.
Why caused me to pick up such a debilitating virus (which I later learned was Coxsackie) at that time? My case history is typical of case histories of CFS/ME patients that I see today. I had a childhood of undetected food allergy (cows’ milk) manifesting in chronic ear, nose and throat problems, multiple antibiotics for tonsillitis, adverse reactions to childhood vaccines (the polio vaccine hospitalised me), childhood mercury fillings (my dentist got paid per number of mercury fillings he placed), two root fillings in teenage years due to a standard western diet of high sugars and grains. It is not surprising that the typical student stresses acted as the fuse that lit the inflammatory fire of CFS/ME. These included being away from home for the first time, a diet of processed foods instead of home cooking, sleep deprivation due noise from a neighbouring student at night and last, but not least, a mercury and root filling make-over by an over-zealous college dentist.
Typically with CFS/ME patients, my viral symptoms did not go away but became gradually worse. Both college and home GPs did not understand the condition and wrote out prescriptions that drugged me up to the eyeballs and added brain fog to the chronic fatigue and vertigo. I felt that sedatives and sleeping pills were not the right answer for an academic strudent struggling to think, yet the numerous doctors I saw in hospitals and GP surgeries had no other answers. Getting through Oxford final exams under these conditions was gruelling and I only just made it. Instead of going on to further training for an exciting career, I returned home to my disappointment parents and to a regime which was more fitting for a ninety year old in a care home.
Yet, I am one of the lucky ones who found a way to reverse CFS and ME and return to life again. I could not accept a life of debilitating fatigue as a young person and was determined to get my life back. But I had to go outside of the NHS to do it. By chance, our family solicitor in Devon introduced me to an ‘alternative’ doctor who had helped his wife get well from ME. This was the starting point of my recovery that offered me hope that improvement could occur. My recovery journey sent me along a different, but more satisfying career path than I had originally planned. It involved going back to university to train in Nutritional Medicine to help other people recover as I had done.
Below is a checklist of some of the steps that I took and which are typical of what is needed to help CFS/ME patients recover:
Thorough case history to look at the factors that triggered the chronic fatigue and then led to ME. This is the vital detective work.
Specilised lab tests to provide the evidence for the treatment programme. These can include tests for:
Chronic immune suppression
Active chronic infections (i.e. Coxsackievirus, Epstein Barr Virus, strep, chronic Covid and others)
Tests related to energy delivery mechanisms of the body (adrenal, thyroid, mitochondria, anaemia etc.)From the lab results, develop a map of the patient’s biology. The goal is then to discover which interventional steps turn out to be the most useful. A strategy to silence retroviruses, along with other anti-infection measures is vital. I have written about the importance of retroviruses in other blogs.
Sometimes CFS/ME patients are very sensitive to foods and supplements because of Th-2 immune dominance. In this case, we need to find out which parts of the case are more amenable to being addressed in a way that yields productive results.
There is no magic bullet for recovery especially if an individual has been ill for months or years. Nevertheless, I would expect to see some signs of improvement within three to six months if we are making the right moves.
Dental revision is typically a key component of recovery as common dental pathologies like mercury fillings, root fillings, silently infected dental extraction sites (cavitations), titanium implants and TMJ (jaw joint) dysfunction are a constant burden on the immune system and a barrier to recovery.
The diet needs to be clean and tailored to the individual. Foods that feed infection and inflammation need to be eliminated and replaced by nutritious foods that support immune recovery.
I have never seen psychiatric drugs improve any CFS/ME patient. However, I have seen individuals improve after being safely weaned off psychiatric drugs under correct medical supervision once the correct immune roadmap is in place.
A new spiritual perspective may be needed for a person to get well from CFS/ME. This may mean moving over from being at ‘effect’ to ‘gentle cause’ in some aspect of one’s life. It may mean disconnecting from any ‘toxic’ personalities in one’s life.
Detoxification may be a significant part of the plan, particularly from metals and pesticides. Viruses are drawn to areas of the body that are metal toxic. However, detoxification must be done at the right time and not when a person is struggling with severe energy issues.
If you are struggling with CFS/ME and would like help, please get in touch with the Good Health Clinic on goodhealthclinic@outlook.com to request a free 30 minute Enquiry Call or book an appointment.
Please note that an Enquiry call is not a consultation but an exploratory call to see if this is a clinical approach you wish to pursue.
To your very good health,
Suzanne Jeffery (Nutritional Medicine Consultant)
M.A.(Oxon), BSc.(NMed), PGCE, MNNA, CNHC
The Good Health Clinic at The Business Centre, 2, Cattedown Road, Plymouth PL4 0EG
Tel no: 07836 552936/ Answer phone: 01752 774755
Disclaimer:
All advice given out by Suzanne Jeffery and the Good Health Clinic is for general guidance and informational purposes only. All advice relating to other health professionals’ advice is for general guidance and information purposes only. Readers are encouraged to confirm the information provided with other sources. Patients and consumers should review the information carefully with their professional health care provider. The information is not intended to replace medical advice offered by other practitioners and physicians. Suzanne Jeffery and the Good Health Clinic will not be liable for any direct, indirect, consequential, special, exemplary or other damages arising therefrom.