Energy Expenditure in ME/CFS: Immune wastage of energy and Rituximab

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We all have a pot of energy which is available to us to spend over the day. What prevents us spending too much is the symptom of fatigue. We have to spend that pot of energy just to stay alive in "house keeping" duties (Basal Metabolic Rate), but in addition we can spend energy mentally, physically, emotionally or immunologically. In ME/CFS either that pot of energy can be small (because of poor mitochondrial function, poor fuel supply, poor adrenal function, poor thyroid function and so on), or we can be spending energy wastefully. Of course, the business of pacing is all about spending mental and physical energy judiciously. Many have experienced how energy sapping it is to expend emotional energy. However, I suspect a greatly overlooked cause of wasting of energy is immunological.

Please see Overview of CFS/ME protocol for a summary of the "Energy Equation" and all of these various Energy Delivery mechanisms and also the Energy Demands.

See also My Book, "The Energy Equation"

Energy must be expended on daily "house keeping" duties. I was intrigued to see the following energy expenditure breakdown in Wikipedia: [see Wikipedia article on Basal Metabolic Rate]

  • Liver 27%
  • Brain 19%
  • Heart 7%
  • Kidneys 10%
  • Skeletal muscle 18%
  • Other organs 19%

It astonished me that the liver consumes more energy than the heart and brain combined! Much of this has to do with assimilating and detoxing food from the gut!

But also, energy is spent "wastefully" and a key area of this wasteful energy expenditure is "immunological" energy - energy spent on chronic infections, allergies, or autoimmunities.

Immunological Energy

I see the immune system to be like the brain, i.e. it is enormously demanding of energy. We all know this – if a healthy person develops influenza, then he becomes bed-bound for two weeks (she becomes bed-bound for a week……!). Work done by Caroline Pond has demonstrated that when wild animals put on weight, the first place they dump their fat resources are round lymph nodes, i.e. the immune system. Please see The Fats of Life by Caroline Pond and also Caroline Pond's webpage at the Department of Zoology, Oxford University. Bone marrow, of course, is very fatty, so this suggests the immune system is not just demanding of energy, but energy in an intensive form i.e. fats and oils.

The immune system spends energy fighting infection, which is, of course, highly desirable. However, if it gets its wires crossed, it may end up fighting the body itself, autoimmunity, or fighting substances which do not cause harm, and this is allergy. However, in ME/CFS I suspect there is another immunological waste of energy which has to do with microbes, possibly “allergy” to microbes.

Post-infectious ME/CFS

A great many cases of ME/CFS follow viral infection and/or vaccination. In these conditions the immune system is switched on to fight the offending microbe. In the short term this is highly desirable. To be effective, all vaccinations contain immune adjuvants which are there specifically to fire up the immune system. When this works in our favour, we call it immunity. However, when it works against us, we call it allergy. Clinically, we know that vaccinations can trigger allergies.

There is no doubt that there are some ME/CFS patients who do not recover until they start taking

In these cases, there is often no overt evidence of infection. I suspect what is going on here is that these microbes are present in low levels which would not normally cause harm to the body, but the immune system continues to fight "the enemy". It is a sort of inappropriate immune activation against microbes or “allergy” to microbes. This is hugely wasteful of energy. Such patients will have a large immunological hole draining their daily energy bucket.

Immune Mapping

What we perceive going on in the body is not what is really going on in the body, but it is what the brain tells us is going on in the body! The brain has a complete map of the body, which includes sensory and motor functions. Please see Phantom Limb Syndrome by Dr Ramachandran. It is possible that this could explain the mechanism by which healing and touch therapies such as Bowen therapy, Reiki, Kinesiology, etc. work. These techniques are literally re-mapping the brain to perceive things quickly, or direct motor actions correctly.

It is possible that the immune system has a similar mapping process. I think of the immune system as having a “map” of what should and should not be present in the body. I imagine it “sniffing” about the place looking for foreigners. There are many good doctors who have experimented with many different types of immunotherapy, such as neutralisation, enzyme potentiated desensitisation and, of course, homeopathy; and it may well be that they are having their beneficial effects because of this re-mapping of the immune system. All these mechanisms are characterised by extremely low levels of molecules or antigens being applied with profound effects that cannot be explained by conventional pharmacology.

See also my pages Reprogramming the Immune System – where conventional and complementary medicine can come together and Reprogramming the brain in CFS/ME

Treatment of badly educated B lymphocytes

Immune mapping probably takes place in B lymphocytes. They start life in the bone marrow, move into the blood stream and are educated by the thymus gland and lymph nodes. This takes a few months. The mature B lymphocytes become the decision makers for immune attack or immune tolerance (war or peace!). Post infectious ME patients may have B lymphocytes constantly at war. These white cells have been badly educated, their wires are crossed.

This therefore gives us a model for treatment. Either

  • We can re-educate these B lymphocytes OR
  • We can kill them OR
  • We can try to reduce the things they are inappropriately reacting against, which may be foods (diet) or microbes (with antimicrobials which could be drug or herbal) or we could change the gut flora with probiotics.

Re-educate B Lymphocytes with Immunotherapy

Perhaps desensitisation with neutralisation, EPD or homeopathy are techniques directed at re-educating these B lymphocytes to respond appropriately by remapping the immune system? In the case of neutralisation the result may be immediate. With EPD (and I know much more about this because I have been using EPD for 35 years!) the result is often delayed by a few months, it lasts weeks to months and then patients may need a top up of the treatment. Although these desensitisations are largely directed at foods, inhalants and chemicals, some microbial antigens are also included. See Enzyme Potentiated Desensitisation (EPD) - how it works and EPD - the practical details of what to do for each dose

Kill B Lymphocytes with Rituximab

This drug is a monoclonal antibody specifically effective against the CD20 receptor on B lymphocytes. It specifically depletes B lymphocytes, i.e. it kills off the standing army – if this army is involved in a civil war (allergy or autoimmunity), then its depletion is a very desirable action! Rituximab is primarily used in cancer chemotherapy. By pure chance a patient who had severe ME received this drug as part of a treatment for her lymphoma and her ME symptoms disappeared. She was delighted! Her daily energy bucket was no longer being immunologically drained!

This prompted a study by her Norwegian oncologists, Prof Olag Mella and Dr Oystein Fluge at Haukeland University Hospital, Bergen, to conduct a placebo controlled double blind trial into the effectiveness of Rituximab in CFS. This was done with 15 patients receiving the active preparation and 15 the placebo. The results from this study, Benefit from B-Lymphocyte Depletion Using the Anti-CD20 Antibody Rituximab in Chronic Fatigue Syndrome. A Double-Blind and Placebo-Controlled Study, was published in 2011 - "Benefit from B-Lymphocyte Depletion Using the Anti-CD20 Antibody Rituximab in Chronic Fatigue Syndrome. A Double-Blind and Placebo-Controlled Study". Rituximab had a significant beneficial effect, with a self-reported Fatigue score improving in 10 out of 15 patients (67%) in the Rituximab group and in two out of 15 patients (13%) in the Placebo group. Sadly, follow up studies were not as encouraging - perhaps because only a subset of CFS/ME sufferers have this issue of B lymphocytes being switched on as a problem.

But, what was so interesting about this effect is that it took 2-7 months to start, and that the mean response duration within the follow-up period for the 10 responders to Rituximab was 25 weeks (range 8–44). This fits very nicely with the time scales I see in my EPD patients – again there is a delayed start, improvement, then top ups required according to the clinical response. This could be linked with ideas on the page Reprogramming the Immune System – where conventional and complementary medicine can come together where it is noted that the “apprenticeship” of new immune cells often takes this long to become the norm.

Reduce inappropriate activation

The final way to tackle this problem is to look at inappropriate activation against microbes or food.

Regarding microbes please see the links above regarding antivirals, antibiotics and antifungals. One can use herbal antimicrobials too but the whole thrust is to try to reduce the level of microbes so much that the immune system stops reacting to them.

Regarding "foods" and "probiotics" this is where the PK diet is so important, and also where getting rid of a fermenting gut is equally important. Please see

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