Today, there is no cure for ME
The cause of ME is not established. There are indications that ME can be composed of different subgroups. However, there are some clinical studies and anecdotal stories that have shown more or less good results for patients suffering from CFS or ME/CFS. Much more can be done for this patient group. Why not try to replicate any study? I am just trying to give you a summary of what I have noticed. Maybe you will find something interesting.
Kenny De Meirleier presented in 1996 a Belgian study of CFS patients who been administrated Ampligen for 24 weeks. All increased on average their activity level by 43%, 53-76 KPS score (KPS = 80, you can perform all daily activities with effort). They also increased oxygen uptake of 1.16 liters / minute to 1.48 liters / minute. It was a pretty good result.
1997, Dr. Lapp showed that Ampligen significant improvement in 80% of their CFS patients and 50% recovered completely. Ten years later, he considered it strange that the medicine, which was a good remedy for a subset of ME/CFS, was not approved by the US Food and Drug Administration (FDA). There have been many trips with the FDA…
Dr. Bateman is confident that Ampligen improves symptoms and function in some patients after a few weeks to months of use. In 2004, she noted that the majority of patients who received the drug showed a clear improvement.
The results of treatment with Ampligen in the United States and Belgium show that there is an effective treatment for a subgroup of ME/CFS patients with severe debilitation. After six months of treatment with Ampligen were actually about 80% of the treated patients generally complete clinical recovered, which meant that the patient was able to go back to school or work. The typical patient had been bedridden because of illness between 3 and 7 years before the initiation of treatment.
An ongoing phase III study in the US inspires a hope to many that Ampligen will be approved in many countries.
Rituximab and Cyclophosphamide
There is a double-blind Phase III study going on in Norway and is expected to be completed this year. In the previous Phase I and II clinical trials, the majority experienced a significant clinical response. The goal, of course, is that the study will fall out well and rituximab should be a recognized method of treatment for a large proportion of ME patients.
Ongoing Phase II study with Rituximab is expensive, and at Haukeland University Hospital, they try instead the cheaper cytostatic Cyclophosphamide against ME/CFS in a phase II study
It is expected to be completed in the beginning of 2017. The purpose of this study is to treat ME/CFS patients with cyclophosphamide as intravenous infusions four weeks apart, six infusions in total. The effects on symptoms and tolerability / side effects during 12 months of follow-up will be recorded, and further tests will be performed to objectively record changes in physical ability. In an earlier pilot study with Cyclophosphamide experienced two of three ME patients a significant clinical response.
Infection Specialist Jose Montoya, MD, from Stanford University have published an open study of 61 CFS patients with elevated viral antibody titers (IgG) treated with long-term antiviral therapy (Watt 2012). Of the 61 patients treated with valganciclovir (Valcyte), 81% experienced a significant improvement of cognitive function.
Antibody titers were considered elevated if patients had HHV-6 IgG> 1: 320, EBV EA> 1: 160 and EBV VCA> 1: 640 (Quest / Focus Diagnostics). Dr. Montoya's study also found that patients with prolonged treatment (6 months or more) were more likely to respond better to treatment.
Martin Lerner, MD, has treated 142 CFS patients with elevated antibodies (IgG) against HHV-6, EBV and CMV with antiviral drugs. He found that 75% improved significantly and continued to improve in 2-3 years with the antiviral treatment (Lerner, 2010).
Valacyclovir seem to work
The psychiatrist Theodore Henderson has been with the antiviral drug valacyclovir recently treated 30 children with ME/CFS (Fukuda JML). 85% got better after 3 months and 92% after 5 months. He has also treated 200 adults and the result of it will be reported shortly. The result seems to be essentially consistent with the feasibility study that was carried out with the children.
52% of CFS patients with Epstein-Barr virus and / or HHV-6 was better after treatment with the drug valganciclovir
30 CFS patients with increased IgG antibodies against HHV-6 and Epstein-Barr virus were treated with valganciclovir in a double-blind, placebo-controlled study for 6 months. The mental fatigue improved.
Valacyclovir can work against EBV
In a small study 2002, 16 of 19 CFS patient with high IgG antibodies against EBV got better after 6 months of treatment with the antiviral drug valacyclovir.
Dr. Dantini claim that about 75% of all people with ME/CFS and fibromyalgia have an active herpes infection
He himself suffered from the disease and was treated with antiviral drugs and became healthy after 6 months. He has treated ME/CFS and Fibromyalgia patients with great success. 75% of them are healthy. The duration of treatment ranged from 6-17 weeks. On a health scale (1-10) patients had prior treatment average 1.92 before and 7.64 after treatment. He usually uses Famvir or Valtrex. He avoids Valcyte because of side effects. In addition to antiviral treatment, patients must also be put on the diet when allergies can be a problem.
Just as Montoya and Lerner is Dantini convinced that IgG is not only a measure of the existence of antibodies against the infection. He believes that there is an infection if the titers of IgG is four time raised than normal.
Kogelnik et al (2006) used the valganciclovir in patients with increased antibody titers (IgG) against human herpes virus-6 (HHV-6) and Epstein-Barr virus (EBV)
12 patients with prolonged symptoms of dysfunction in the central nervous system (CNS) were found to have very increased antibody titers (IgG) against human herpes virus-6 (HHV-6) and Epstein-Barr virus (EBV). All patients had neurocognitive following symptoms: impaired cognitive function, sleep disorders, poor short term memory, and fatigue.
The researchers tried to determine whether increased antibodies (IgG) against EBV and HHV-6 indicated chronic viral activation in patients with CNS dysfunction and their symptoms could be improved by suppressing viral activity of valganciclovir.
12 patients who had been ill for more than a year (median 3 years, range 1-8 years) were treated with 6 months of valganciclovir in an open study. 9 of 12 (75%) of the patients was significantly better and was able to return to work and also resume recreational activity full time. EBV IgG titer decreased from 1: 2560 to 1: 640 and HHV-6 IgG titer fell from 1: 1280 to 1: 320. No serious adverse events were observed among the 12 patients. This study suggests that excessive IgG values are an equal sign with an active infection, despite the absence of IgM usually indicates active infection.
For treatment of ME / CFS claimed valganciclovir (Valcyte) to be stronger and have a more broad antiviral spectrum and are generally much more effective than other antivirals
It only works against DNA viruses. There are few antiviral agents that work against RNA viruses. Oxymatrine, available in Dr. Chias medicine Equlibrant, alleged to have some activity against RNA viruses.
Valacyclovir may be useful in combination with valganciclovir against EBV + other DNA viruses
Lerner believes there is a good potential to treat ME/CFS. In cases EBV act as independent viruses, he believes that the antiviral drug valacyclovir are effective. If there are co-infected with CMV or HHV-6: valacyclovir combined with valganciclovir is preferable.
In one study Dr. John Chia was able to show by biopsy of the stomach that 82% (135 of 165) of ME/CFS patients have active infection by enteroviruses. Compared with the blood test, there only showed that 20% had infection. Chia has successfully treated over 500 patients. Approximately 52% improved (including his son). He use mainly with drug Equlibrant where the active substance is oxymatrine, but in some cases he uses also interferon.
Treatment with oxygen, hyperbaric oxygen therapy etc
Hyperbaric oxygen therapy
16 ME/CFS patients (Fukuda) were for 3 weeks (Mon-Fri) undergoing HBO therapy in hyperbaric chambers for 90 minutes per session for 15 days. The pressure was 2.4 bar. All showed significant improvements.
Hyperbaric oxygen therapy also works against Fibromyalgia
A clinical trial with 48 women diagnosed with fibromyalgia, improved (100%) of those who completed a two-month oxygen therapy - by staying in the oxygen chamber.
And chronic Lyme disease (case study)
In a study of 60 CFS patients treated with the low dose EPO (8,000 units). Even after 15 days of treatment was 51 (85%) of 60 patients improved - with reduced symptoms. The drug is used mostly for the treatment of symptomatic anemia (such as fatigue, weakness and shortness of breath). Anemia occurs when blood does not contain enough red blood cells.
EPO is a protein having a function in the regulation of erythrocyte production. The hormone is produced naturally in the kidneys, but can be prescribed as medicine for certain diseases. It is also used illegally as doping. EPO is a form of colony stimulating growth factors which regulate bone marrow cells of all mammals and differentiate blood cells for their various tasks.
There are three main types of anemia
1. As a result of blood loss
2. As a result of reduced production of red blood cells
3. Due to increased destruction of red blood cells.
Causes of blood loss include trauma and gastrointestinal bleeding. Causes of a reduced production might include iron deficiency, vitamin B12 deficiency and thalassemia.. Reasons for increased degradation involves a number of genetic disorders such as sickle cell anemia, infections such as malaria, and some autoimmune diseases and more.
The above studies strengthens the obvious theory that the majority of both ME/CFS and fibromyalgia patients have problems with oxygenation at the cellular level. Exactly why is more difficult to say. It may be due to infection, but it can obviously also be due to autoimmunity or anemia.
Down-regulation of C4a levels made CFS patient healthy
(Eporatio down regulates C4a levels)
A 39-year-old woman was bedridden and unable to work. Her symptoms included severe fatigue, muscle and joint pain, cognitive problems and shortness of breath during exercise. Two years later (1991) she was diagnosed with CFS. A long series of tests were either normal or negative. She tested for Lyme disease, toxoplasmosis, cytomegalovirus, hepatitis C, brucellosis, histoplasmosis, blastomycosis, coccidioidomycosis, Mycoplasma pneumoniae, C-reactive protein, Lupus panels, antimicrosomal and antithyroglobulin antibodies, cosyntropin stimulation, CA antigen 125, HIV antibodies, immunoglobulins IgG, IgM, IgA and IgE, and IgG subclasses, total of C4 and C3, tumor necrosis factor, interferon-α, interferon-γ, interleukin (IL) 1β, IL2, IL3, IL4, cutaneous immunoflourescence antibodies, lymphocyte counting, total lymphocytes, natural killer cells, natural killer cell activity Raji and immune cell activity.
Additional tests indicated consistently higher levels of C4 a, which is one of the markers of active immune reactions of various kinds.
It is not clear how they decreased the C4 levels. But she was after down regulation completely healthy. It took two months. All symptoms disappeared and at follow-up 16 years later, she was still healthy.
More about decreased levels of oxygen in the cells
Not enough oxygen leads to increased consumption of amino acids. Just before Christmas, the Norwegian oncologists published a study where they found that pyruvate dehydrogenase complex (PDH) has reduced capacity. It's about the process when the glucose is converted to pyruvate to eventually be used by the mitochondria for energy production (ATP). The study shows that in ME patients leads to increased lactate production (due to anaerobic environment) as well as increased consumption of certain amino acids as fuel alternative pathways for ATP production. They also refers to an earlier study of 100 CFS patients compared with 82 healthy controls, which demonstrated fewer amino acids in the urine sample.
Lack of amino acids leads to reduced calcium absorption
The Norwegian study could be linked to the Australian study, publicated a few days ago. It is showing that the NMDA receptors have impaired the cells get too little calcium (leading to exhaustion). NMDA receptors are namely dependent on display amino acids, including glutamate, glycine, and aspartate, which ME sufferers may have a lack of.
If NMDA receptors are not working, the cells do not get enough calcium and then you become completely exhausted. Compare with cows just calved. A common problem is that they have trouble getting up because of calcium deficiency. The huge milk production before calving depletes the body of calcium. It is possible to counteract by giving the cow a “calcium shot”. The situation is different with ME sufferers who can not absorb the calcium because of the NMDA receptors are not functioning properly, which they do not seem to do according to the latest published study.
Agonists of the NMDA receptors are L-glutamate and L-glycine, also L-aspartate. There are several studies proving it. Here are some:
L-aspartate is also able to help to burn fat for energy. L-arginine and L-aspartate in combination also increase oxygenation, endurance and fat burning. Oxygenation of cells is also a problem when pyruvate is converted to lactate instead of ATP in the oxygen-poor environment.
This is an interesting article (sorry, in swedish) that shows how the body increases endurance by means of L-aspartate and L-arginine. I can imagine that L-arginine can be replaced with L-citrulline as it is longer-acting (days instead of hours).
Dimercaptosuccinic acid (DMSA), also called succimer is interesting because it contains succinate
ME patients have decreased levels of succinate (Yamano and Fluge & co). In combination with ALA (lipoic acid), it should also have high bio-uptake. In addition to regulating cell respiration contributes DMSA to cleanse the body of heavy metals. A variant is also used by Swedish health care by heavy metal poisoning (compassionate) - Succicaptal.
Another problem is low levels of acetylcholine, even these receptors according to several studies, seem to do not work as they should. DMAE or choline can then be helpful. There is also a risk that it is due to autoimmunity, but it might also be the underlying problem of the NMDA receptors?
In a small pilot study they measured the clinical efficacy of the immune-stimulating drug Isoprinosine of sixteen patients, resulting in improvement of symptoms in 60% of patients. Patients reported improved clinical parameters also showed significantly improved NK cell activity that correlated with the duration of treatment and also significantly increased in CD4 + T helper cells and IL-12 levels.
Swedish pilot study - berry powder
12 CFS patients received a special berry powder for 30 days to see if treatment with antioxidants had any effect. The mixture consisted of dried and ground blueberry, buckthorn, crowberry, cranberry, and lingonberry, containing both peel, pulp, juice and seeds.
The group as a whole declined (subjective) their symptoms between 25-40%.
Clinical study of 30 CFS patients showed positive results
In a 24 week study they compared the effects of acetyl L-karnetin, propionyl L-carnitine and two compounds in combination at 30 CFS patients. They were divided into three groups:
1 group received (2 g / day) Acetyl L-carnitine
1 group received (2g / day), propionyl L-carnitine
1 group received combination of both
Effects were assessed by clinical impression, multidimensional fatigue inventory, the McGill Pain Questionnaire, and attention tests (Stroop).
Clinical impression of change after treatment showed significant improvement in 59% of patients in the acetyl L-carnitine group and 63% of propionyl L-carnitine group, but less in the combination group (37%). Acetyl-L-carnitine significantly improved mental fatigue (p = 0.015), while propionyl L-carnitine alone improved general fatigue (p = 0.004). Attention / concentration levels improved in all groups, while the pain was not reduced in any group.
Two weeks after treatment, there was a deterioration of fatigue with 52% of acetyl L-carnitine group, 50% of propionyl L-carnitine group and 37% in the combination group
The study showed that both Acetyl-L-carnitine and propionyl L-carnitine improves each state of a majority of CFS patients during treatment (not afterwards). Acetyl-L-carnitine had greater positive effect on mental fatigue than Propionyl L-carnitine.
30 of 38 patients with CFS were better by individual treatment
Different drugs and supplements prescribed (Jacob E. Teitelbaum, etc.).
Increased IL1-levels are common in ME / CFS patients
A randomized placebo-controlled study has recently been carried out in the Netherlands to determine whether interference with IL-1 can reduce fatigue and disability of ME/CFS patients. 25 patients have received IL1 inhibitor, Anakinra (Kineret) and 25 patients received placebo. The study began recruitment in 2014 and it would have been presented in June 2016, but still has no information published. There will be a result soon.
Examples of a previous study
In a study from 2012 measured IL-1 in 107 patients with ME, 37 patients with chronic fatigue syndrome (CFS), and 20 healthy controls. IL-1 and also TNF-alpha (IL-6) were significantly higher in patients with ME than in the control group and the patients with CFS.
Professor Martin Pall at Washington State University recovered from CFS in 18 monthsHe has devoted the last time of his career to understanding and treating CFS. The basic strategy: to reduce nitrogen-related free radicals by antioxidants.
With this as background Ingrid Franzon conducted a clinical trial of 9 CFS patients. They were administered 4 different supplements for 8 weeks. A sharp improvement in physical symptoms was observed already after 4 weeks. Regarding the improvement of the mental symptoms decreased, but not as dramatically as the physical.
There was convincing evidence that Dr. Pall hypotheses and proposals for antioxidant supplementation was right.
The dietary supplements was
1. Q10 (CoQ-Gamma E with Tocotrienols & Carotenoids)
2. Multivitamin (MVM-A)
3. A mixture that includes milk thistle, green tea, sea buckthorn mm (FlaviNOx)
4. Omega 3 (Super EPA Fish Oil Concentrate)
More about dosage available on the website.
A woman was cured from CFS and fibromyalgia through changes in diet and certain supplements
"I discovered that between 1000 and 2000 mg of magnesium cured my FM completely!"
Incidentally eliminated all gluten and starch from food and she ate three eggs for breakfast, protein (cheese or meat), salad for lunch, and red meat and green vegetables for dinner. I have also eaten L-carnitine and drinking green tea (Yerba mate) regularly.
http://www.quora.com/Elaine-Asrai/H...with-someone-today-and-decided-it-would-be-a- good-idea-to-post-it-so-others-can-read-it-too-I wa
Alex Terry suffered 15 years of ME/CFS. She began with lymphatic massage also called for osteopathic treatment . She got better, much better!
Recovered from CFS by high dose of vitamin C
She increased intake of ascorbic weekly to get the gut used. In the end, she was up in the whole 8 teaspoons a day approximately (24 grams).
Recovered from CFS with lactoferrin
She was diagnosed with CFS 6 years ago. After a lot of visits to doctors and psychiatrists she started to read about CFS. She rested a lot and stayed in the sun. She speculates that she had an imbalance in the body with poor absorbency. She mentions Vitamin B6, B12, C, iron, honey and lemon, but the list is long. Unfortunately, it is not published. The most important thing might be that she was taking lactoferrin, as she drank in a kind of shake bought at the sports shop (brand: USN, which you can read about further down in the thread).
Swedish woman with ME was cured by Desloratadine
Swedish woman with ME was cured by immunized healthy eggs
Nitroglycerin helped but relapsed after 8 years because of surgery
One of the CFS was healthy - had chronic bone infection in the jaw
"Because there was no blood flow to the area, the body could not build up any defense against the anaerobic bacteria that live in the dead marrow. Toxins from these bacteria poisoned the blood. "
HIV doctor got ME, making himself healthy
Central to the treatment itself was to forcefully reduce stress and increase the level of glutathione (yes you know the body's super antioxidant that decreases by 1% annually from the 20s and has the largest impact on the aging process). The key was glutathione precursor: N-acetylcysteine.
Recovered from ME by treating candida and prevent sugar
One person became healthy after avoiding all sugar from diet but also avoid flour, yeast and dairy products as much as possible.
Recovered after 18 months from CFS and fibromyalgia
"Initially, I healed my gut under the leadership of integrated physician with a series of specific probiotics that I was missing and a number of other special additions including digestive enzymes, phosphatidylcholine, and L-glutamine. Most important of all were significant changes in the diet to eliminate irritating foods such as cereals (wheat, rye and barley in particular) and dairy products. My digestion improved in a few months. I also used various supplements to improve my metabolism such as B vitamins, Q10, and a variety of trace elements that I had a lack of, plus of course significant amounts of magnesium. All this has also helped with my detoxification and reduce oxidative stress. I avoided aggressive hormone treatments and intake of stimulants. One of the most important things for me was to create a healing environment. I made lifestyle changes and meditation exercises. "
Gottfries immunotherapy with Staphylococcus vaccine
Professor Gottfries (Sweden) called ME for Toxopati before ME got a name. He thought it was too much toxins in the blood. He examined about 30 patients where the majority had either limits or outside reference. He started to take Staphylococcus vaccine. http://socialmedicinsktidskrift.se/index.php/smt/article/view/1455/1258
He has also made a blinded study of 100 ME patients where 65% became better of Staphylococcus vaccine, which according to his hypothesis activates the immune system and thus can handle these toxins - a form of immunotherapy.
I have not mentioned B12 injections and LDN, both individually can be good for about half of the patient population what I know.
23 February 2017
What can help?
Blog entry posted by matsli, Feb 23, 2017.
About the Author
My name is Mats, and I am from Sweden. My wife Claudia got sick in meningitis the autumn 2008. She got the diagnose ME/CFS 2012.We realized she got Lyme disease march 2016.She has now been much better after 8 years and abot 10 month treatment. I have some Facebook groups in Scandinavia with about 3000 members.My blog www.newsaboutdisease.com has been visited by over 600.000 and have about 1300 followers. I have been reading a lot of studies about ME/CFS and I really hope that all get help some day.