You are here: Simmaron ResearchImmune SystemAre Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia Immune Exhaustion Disorders?

Are Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia Immune Exhaustion Disorders?

March 21, 2016

When we think of immune problems we often think of the immune system going berserk and attacking healthy cells but another kind of immune issue called can be present. Recent studies suggest immune exhaustion may be more of a problem for many chronic fatigue syndrome (ME/CFS) and/or fibromyalgia patients than an immune system run amok.

CHRONIC FATIGUE SYNDROME (ME/CFS)

“I think what we’re seeing is an immune system exhaustion over time” Dr. Mady Hornig

Chronic fatigue syndrome (ME/CFS) has generally been thought of as an immune activation disorder. Although much of the interest in the Lipkin/Hornig 2015 study focused on the immune activation found early in the disease, the study found 13 downregulated immune factors in the plasma of longer duration patients relative to the healthy controls.  Remarkably the same cytokines that were upregulated early in the disease were downregulated later in the disease.

exhaustion

Are ME/CFS and fibromyalgia immune exhaustion disorders?

That pattern smacked of something called “immune exhaustion”. Immune exhaustion is a well-known pattern of immune depletion seen in people with chronic infections or autoinflammatory diseases.  Immune exhaustion may be the main reason why some people just can’t knock an infection.

The patterns seen in the big 2015 Lipkin/Hornig Chronic Fatigue Initiative immune blood study were intriguing but not conclusive. Studies published since then, though, suggest that immune exhaustion – not immune activation – could be the main culprit in people with longer duration chronic fatigue syndrome (ME/CFS) and fibromyalgia.

It should be noted, again, how important it was to differentiate shorter from longer duration patients. No immune abnormalities when the two subsets were mixed; only when they were differentiated by disease duration did the immune issues pop up.

The Simmaron Research/Lipkin/Hornig Spinal Fluid Study

Cytokine network analysis of cerebrospinal fluid in myalgic encephalomyelitis/chronic fatigue syndrome.Hornig M, Gottschalk G, Peterson DL, Knox KK, Schultz AF, Eddy ML, Che X, Lipkin WI.Mol Psychiatry. 2016 Feb;21(2):261-9. doi: 10.1038/mp.2015.29. Epub 2015 Mar 31.PMID: 25824300

Next came the Lipkin/Hornig/Simmaron Research Foundation study examining immune factors in the spinal fluid of ME/CFS and multiple sclerosis patients and healthy controls. Not only was a broad pattern of immune inhibition found in the longer duration patients but for the first time match between blood and spinal fluid study was found: the same issues appeared to be occurring in both the central nervous system and the body.

The number of downregulated immune factors – twenty-one in all (vs 13 in the blood study) in the spinal fluid of longer duration ME/CFS patients relative to healthy controls was notable and suggested that the closer one moves to the brain the more evidence of immune exhaustion one may find.

Both ME/CFS and MS patients exhibited immune exhaustion compared to healthy controls but the degree of immune exhaustion seen in ME/CFS was greater than that seen in MS. Demonstrating how complex the immune system is, the two diseases differed more from each other than from the healthy controls.

viral infection

An upregulated chemokine suggests that a viral infection could have triggered central nervous system changes in ME/CFS and MS

In one perhaps important way, though, they were quite alike. A chemokine called CXCL10 that clears the way for the entry of natural killer cells and T lymphocytes into the brain in response to a viral infection was increased in both disorders.  Increased levels of that chemokine in conjunction with the different kinds of immune exhaustion found in both disorders suggests that either different viruses could be present or a different response to the same virus has occurred.

The fact that infectious mononucleosis or glandular fever increases the risk of coming down with either ME/CFS or multiple sclerosis is intriguing in this regard. Could ME/CFS and MS simply reflect differing responses to the same virus?

Jarred Younger recently suggested that MS may be a more damaging form of ME/CFS. Neuroinflammation is present in both, but in one (MS) the neurons are damaged and in the other (ME/CFS) they are not.

Very high levels of CXCL10, such as appear to be present in MS, are associated with nerve damage. More moderately raised levels, such as seen in ME/CFS, are not. CXCL10 levels may also be able to tell us which patients respond better to antivirals. Hepatitis C and HIV patients with higher CXCL10 levels responded less well to antivirals than patients with lower levels.

The Lipkin spinal fluid study is looking more and more like it could end up being a seminal study.  It highlighted a new subset – “the Peterson subset” and validated and expanded on the dramatic immune downregulation seen in the earlier blood study.

A follow-up Simmaron Research/Lipkin/Hornig spinal fluid study is in the works.

The spinal fluid study wasn’t the end of the trend towards immune downregulation, though; right on its heels came the large Landi-Houghton blood study.

The Simmaron Research Foundation Australian Spinal Fluid Study

Mediators Inflamm. 2015;2015:929720. doi: 10.1155/2015/929720. Epub 2015 Mar 5.Cytokines in the cerebrospinal fluids of patients with chronic fatigue syndrome/myalgic encephalomyelitis.

The Simmaron Research Foundation also participated with Sonya Marshall-Gradisnik at Griffith University in a small pre-pilot spinal fluid study. In this smaller study only one immune factor, IL-10, significantly differed between the ME/CFS patients and the healthy controls but the trend was the same; IL-10 was significantly reduced in the ME/CFS patients.

This study may tell us how immune depletion in one area can lead to immune activation in another. Because IL-10 is an anti-inflammatory, reduced IL-10 levels in the cerebral spinal fluid could reflect a brain with inflammation.

The Houghton-Landi Blood Study

Cytokine. 2016 Feb;78:27-36. doi: 10.1016/j.cyto.2015.11.018. Epub 2015 Nov 28. Reductions in circulating levels of IL-16, IL-7 and VEGF-A in myalgic encephalomyelitis/chronic fatigue syndrome. Landi A1, Broadhurst D2, Vernon SD3, Tyrrell DL4, Houghton M5.

Michael Houghton isn’t just any researcher. A Lasker award winner, he got bit by the ME/CFS bug during the XMRV saga. (He got bit so hard that the Solve ME/CFS Initiative even got him onto the federal advisory panel for ME/CFS ( CFSAC) for a while.)  Researchers of his ilk are a real asset to our community and it’s good to see him remaining engaged. In this study he worked with Bateman-Horne Center’s “Research Czarista” Suzanne Vernon.

The Landi-Houghton study examined 34 immune and growth factors in no less than 100 longer duration ME/CFS patients.  This study also found little evidence of overt immune activation. Instead,  a cluster of down-regulated immune factors ( IL-16, IL-7 and VEGF-A) popped up which suggested ME/CFS –  at least in its later stages – was more characterized by immune depletion. They also suggested that ME/CFS patients might be a aging a bit more rapidly than normal.

Early Aging?

 

Immune depletion showed up in longer duration patients in the Houghton study

Immune depletion showed up in longer duration patients in the Houghton study

IL-7 plays a critical role in NK and T-cell proliferation and induction and IL-7 levels are associated with cognitive declines during aging. The authors suggested that the immune signature they found could mimic aging. It’s not the first result to suggest early aging may be present in either ME/CFS or FM.

One FM study found cognitive declines suggestive of people who were twenty years older.  Reduced telomere lengths (a sign of aging) were found in the white blood cells for FM patients and the CDC has reported finding reduced telomere length in chronic fatigue syndrome as well.

Two Factors Stand Out

VEGF-A – VEGF-A promotes the survival and stability of endothelial cells lining the blood vessels, stimulates muscle and blood vessels and has neuroprotective factors.  It also promotes neuron growth by stimulating epithelial cells to release BDNF – which appears to be low in ME/CFS.

VEGF-A is becoming a factor to look out for in ME/CFS. For one thing it affects the blood vessels. For another reduced VEGF-A levels also popped up in the Simmaron Foundation/Lipkin/Hornig spinal fluid study and in a Gulf War Syndrome study .

Eotaxin – Eotaxin has suddenly appeared on the ME/CFS scene. It was one of only two factors upregulated in the spinal fluid study. Remarkably, high eotaxin levels have been found in long duration patients in three recent studies.

Increased levels of eotaxin have been associated with impaired learning, memory deficits and reduced neuron production in mice as they age.

These consistently increased eotaxin levels could signify either an allergic response a central nervous system infection.

FIBROMYALGIA

The results of immune studies in FM are mixed but three recent studies suggest a scenario of immune depletion may be occurring in FM as well.

A 2012 study found that immune cells from FM patients that were stimulated with an antigen failed to respond as readily as did those of healthy controls.  The dramatic reductions – from 1.5 fold to 10-fold of normal – were found across a wide range of immune factors (IFN-γ, IL-5, IL-6, IL-8, IL-10, MIP-1β, MCP-1 and MIP1-α).

Another fibromyalgia study found a “stark decrease: in the levels of three Th2 cytokines (IL-4, IL-5, and IL-13). Because the cytokines with lowered levels had anti-inflammatory effects the authors speculated that inflammation might be increased in FM. Note that reductions of these anti-inflammatory cytokines (and IL-10 in ME/CFS) might be all that is needed for normal levels of pro-inflammatory cytokines to produce inflammatory effects.

Similar trends toward reduced levels of anti-inflammatory cytokines has also been found in  depression.

Exercise Study Reveals Immune Depletion

J Neuroimmunol. 2014 Dec 15;277(1-2):160-7. doi: 10.1016/j.jneuroim.2014.10.003. Epub 2014 Oct 18.Preliminary evidence of a blunted anti-inflammatory response to exhaustive exercise in fibromyalgia. Torgrimson-Ojerio B1, Ross RL2, Dieckmann NF3, Avery S4, Bennett RM5, Jones KD6, Guarino AJ7, Wood LJ8.

Another fibromyalgia study found a marked difference between the immune and hormonal responses of healthy controls during exercise and FM patients. Four anti-inflammatory factors (IL-6, IL-10, ACTH, and cortisol) increased and two pro-inflammatory factors (TNF-a, IL-8) decreased during exercise in the healthy controls.

The anti-inflammatory response, however, was blunted in FM patients (ACTH, cortisol, and IL-10)  during exercise.

exercise fibromyalgia

Exercise was associated with immune depletion in one fibromyalgia study.

This study also found normal IL- 6 levels which was a surprise given the reductions in IL-10 (another anti-inflammatory cytokine) found.  (IL-6 production by the muscle cells during exercise is believed to trigger IL-10 production.)

That odd finding suggested another way to inhibit anti-inflammatory activity. The authors speculated that FM patients’ muscles may be pumping out normal levels of IL-6, but the signal IL-6 produces to create anti-inflammatory products is simply not getting through.

They suggested that a reduced anti-inflammatory response during exercise could very well play a role in the pain FM patients associate with exercise. Anti-inflammatory cytokines stop the pain receptors on nerves from being activated. Take away those cytokines and FM patients could experience increased pain during exercise.

The authors proposed that a quick immune hit during exercise could be responsible for lasting pain, stiffness and fatigue FM patients experience after exercise.

Conclusion

While some studies differ, recent studies suggest a broad pattern of immune exhaustion may be taking place in both chronic fatigue syndrome and fibromyalgia. That exhaustion is most likely caused by what Lipkin and Hornig called an “exuberant stimulation” of the immune system due to an auto-inflammatory process or a chronic infection.

It’s possible that exhaustion in one part of our carefully balanced immune systems could lead to undue prominence of another part.  Lipkin and Hornig suggested the immune reductions in the spinal fluid found suggested that immune activation might be occurring in the central nervous system. Likewise the FM study suggested the depletion of Th2 factors suggested immune activation could be occurring even though levels of pro-inflammatory cytokines were not increased.

Immune exhaustion is a serious issue in several diseases and efforts are being made to battle it. How the medical profession is tackling immune exhaustion is a subject for another blog.

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45 Comments

  • dee

    March 21, 2016 at 4:54 pm - Reply

    good study but WHAT can we take for immune system when vitamins & everything under the sun we tried doesn’t work? finding many things about M.E./CFS BUT giving us nothing to take isn’t helpful!

    • Cort Johnson

      March 21, 2016 at 5:01 pm - Reply

      Hopefully these findings will ultimately lead to some treatments. Actually drugs are being developed to tackle the problems of NK and T-cell exhaustion. I don’t know if they will apply to ME/CFS or FM or not. ..The more agreement we find in studies, though, the money that should flow to this illness and the better chance we have of getting good treatments.

      I know that Dr. Klimas’s Neuroimmune Medicine Institute is trying to figure out what drugs/supplements to take in which order to improve ME/CFS and Jarred Younger is doing a bunch of work on assessing microglial treatments. I guess I would say stay tuned and we’ll see what happens…

  • Lisa

    March 21, 2016 at 5:40 pm - Reply

    I have FM and my father had MS. In spite of being told otherwise I feared getting MS when younger. Then in my 40’s I was diagnosed with FM. I look in all the studies for connections between the two diseases. If I ever hear of a study using people connected parentally I will do what I can to participate.
    Something all of us with ME/CF/FM have difficulty with is our doctors do not believe we can get worse over time. They read these diseases are not progressive. I think they ate classified as such because they don’t cause death. It should be clarified that the symptoms DO progress. If there is any way to disseminate this clarification we all would benefit so much.

  • Cort Johnson

    March 21, 2016 at 6:29 pm - Reply

    You might want to check out and spread around this poll – http://www.cortjohnson.org/forums/threads/do-you-have-progressive-chronic-fatigue-syndrome-me-cfs.2801/ – which suggests that ME/CFS is, indeed, often quite progressive (unfortunately). .

  • Joan McDaniel

    March 21, 2016 at 7:02 pm - Reply

    dee and Cort
    Remember your immune system is your gut. I took a homeopathic approach to restore my health. I didn’t take lab produced supplements I took the real thing real food mostly raw or as raw as I could tolerate and grown in ground that was as close to me as possible. If not my own garden, then my local farmer or farmers market. I wrote this article about the immune system and are we being too clean and destroying the very thing that is to protect us our immune system. I wasn’t ever diagnosed with FM or CF but from it’s description I had something close to it. Anyway my vote is for a weakened immune system not an overactive immune system which is the standard response from modern medicine.
    Are We Being Too Clean?
    http://coconutcreamcare.com/2015/04/10/are-we-being-too-clean/

    • dee

      March 22, 2016 at 2:15 pm - Reply

      been taken probiotics and digest gold for many yrs, drinking nothing but filtered water and thought that would help but so very ill. started taking biomune for many yrs, just after this hit and nothing! don’t eat much but always took vitamins and minerals. I was ok till OVERNIGHT this hit and now i’m thinking it might be from mercury filling dentist exposed me to because I had 2 horrible warnings of severe exhaustion then severe weakness 1 and 2 months after that I couldn’t even eat, then boom, overnight I couldn’t get outta bed and felt like I was ready for death and still do everyday!

  • Sharon Kramer

    March 21, 2016 at 8:00 pm - Reply

    I keep seeing the words “viral” and “bacterial” in the research which you cite as possible/probable causes of ME/CFS. What research, if any, is being done to determine if there may be a fungal link to causation?

    • Beca

      March 22, 2016 at 5:49 am - Reply

      fungal, bacterial, viral, CWD (cell wall deficient — some forms of Borellia and mycoplasmas?) — are all invited to the biofilm house party when the human micro biome is destroyed or unbalanced by antibiotics, environmental pollutants, some vaccines perhaps, Smart Meter and wifi radiation that knock down proper mitochondrial function too… all these are factors that with the right genetic and stress breakdowns keep a biosystem from recovering once it has been attacked. positive thinking and meditation, etc. all help but cannot make up for a GMO/crap/processed food diet, EMFs/ELFs, and biotoxin mold exposure thrown in the mix. there are many online webinars for free on Adrenal crash supports that can assist in recovery from the stress triggers and thyroid mismanagement (see site Stop the Thyroid Madness)

    • Cort Johnson

      March 22, 2016 at 2:34 pm - Reply

      Good question Sharon…Dr. Lipkin is looking into this. Check this out from the Microbe Discovery Project

      http://www.microbediscovery.org/blog/archives/490.html

      For example, perhaps there could be an unusual fungal overgrowth in the gut of a subset of ME/CFS patients, resulting in cytokine abnormalities that may, in turn, be causing the symptoms.

      Take, for example, cryptococcus neoformans, a human fungal pathogen that mainly infects individuals with compromised immune systems, such as patients undergoing transplant or those afflicted with HIV/AIDS. Acute infections with this fungus are said to be rare in those with fully functioning immune systems, but cryptococcus neoformans can infect the central nervous system and cause inflammation of the brain. Symptoms of a central nervous infection may include fever, headache, lethargy, and cognitive symptoms. Perhaps the presence of a similar fungus could cause chronic symptoms in some ME/CFS patients? At this point in time, this is just conjecture, but Dr Lipkin will be able to detect any such fungal infection, and any viral infection or unusual population of bacteria in the gut.

  • Sharon

    March 21, 2016 at 9:00 pm - Reply

    Thanks again for some good reporting Cort!

  • jose

    March 22, 2016 at 1:10 am - Reply

    Y a un corto o medio plazo , que esperanza tenemos?

    Asi no se puede vivir y medicos poco preparados y sin interes en saber sobre este mal, que hacemos?

  • Audrey Scougall

    March 22, 2016 at 1:20 am - Reply

    Hans Selye’s General Adaption Syndrome was published in 1936, I was teaching ME/CFS patients about its relevance in the 1980’s. When will researchers stop reinventing the wheel and acknowledge what has already been demonstrated. Yes a stressor or multiple stressors of any kind brings on a new elevated level of homeostasis, tired and wired is one description. But it doesn’t end there. When the stress is sustained, then comes the exhaustion, burnout and crash. Familiar? Oh Yes! And the effects on physiology are predictably wide spread. Thanks for your posts.

  • Cecelia

    March 22, 2016 at 2:41 am - Reply

    My immune system indicators have been very low for years. I am over 20 years into this and now in my upper 60’s. Unlike what Jarred Younger thinks, however, nerves are being damaged or destroyed. I have increasingly bad small fiber neuropathy and increasingly all over the place. The decline in autonomic functioning and increase in cognitive and memory problems also suggest nerve degeneration. It may not be the exact kind seen in later MS but it is some kind of nerve degeneration.

    My guess is that most of the people who participate in research are younger, with fewer years of illness and are not the bed or housebound people. Nerve degeneration may not be showing up yet in that younger, shorter term group.

    • Cort Johnson

      March 22, 2016 at 2:36 pm - Reply

      I think Younger was referring to the nerves or neuron’s in the brain but you may very well be right. One thing that is clear I think is that researchers are going to be taking duration into account more in their studies.

    • dee

      March 22, 2016 at 3:16 pm - Reply

      I as well suffered from this illness for 18+ yrs. and nearing mid 60’s AND housebound . I notice i’m NOT getting better and need help myself. they NEED to look into us seniors too.

  • Matthias

    March 22, 2016 at 10:22 am - Reply

    Interesting. Low IL-10 can lead to increased microglial activation.
    Any IL-10 boosters? I think melatonin does…

  • Tina

    March 22, 2016 at 3:50 pm - Reply

    I have been commenting on Remy’s post on HR’s forum page regarding ER stress and misfolding protein. A nexus has emerged in my own case with preeclampsia and several other things. One thing that jumped out at me in this article was that the VEGF family is mentioned in association with preeclampsia and then you mention it here. Endothelial dysfunctions just keeps popping up for me. My last chest CT scan stated, “raises suspicion for underlying interstitial lung disease.” Yep, you can also find literature on the VEGF family and Interstitial Lung Disease. I am also predisposed to Type 2 Diabetes and Alzheimer’s both of which mention the VEGF family.

  • Beverly

    March 22, 2016 at 5:35 pm - Reply

    I too have been in this 20+ years.I am 62 and 98% housebound! This IS progressive! It also is hereditary! I have a 39 year old daughter suffering with FM/CFS. I am disparate for energy!!! I feel as though I am dying! I am willing to participate in any study. I would love to solve this for my children’s sake!

    • Cort Johnson

      March 24, 2016 at 2:59 pm - Reply

      Studies do suggest there is a strong hereditary component to ME/CFS and Fibromyalgia. Both the Simmaron Research Foundation and Dr. Bateman in Salt Lake City are doing genetic studies to see if they can figure out what is going on.

  • Kathy

    March 22, 2016 at 9:14 pm - Reply

    Cort, is this the study you referred to a few months ago that you said had yielded some “shocking” findings? If not do you know when that might be published? I hope it’s OK to ask that question.

    • Cort Johnson

      March 24, 2016 at 2:58 pm - Reply

      No – I think that is the gut microbiome study. If the finding presented by Dr. Lipkin at the Simmaron event holds up it revealed something that was surprising to me and yet fit as well. I don’t know when its going to be published but I imagine we’re getting closer and closer..

  • Kimberly

    March 23, 2016 at 2:47 am - Reply

    I find this all quite interesting. I have FM and the words “there seems to be nerve involvement ” often comes out my many doctors mouths .I have neuropathic type nerve pain that is getting more wide spread , along with neuralgia. I am really hopeful that they find what is causing all this nerve pain . And I also and wondering how much gut health is going to play into this . Because so many of us have coexisting health issues like IBS.
    Also I enjoyed reading the article on FM and exercising .It should be interesting to see how they get around this immune depletion. A few years ago I was able to do 6 miles a day on my exercise bike . Now I am homebound practicality and I am able to go for a walk around the block at most twice a week.

    • dee

      March 24, 2016 at 4:44 pm - Reply

      I wonder how the older folks like me will fare in time as life STOPPED for me as this came on in my mid 40’s and brain-wise NOT getting better as well as WEAKNESS, EXHAUSTION, FEELING SO HORRIBLY ILL everyday is getting maddening! good research BUT nothing to offer!

  • delva alite

    March 23, 2016 at 5:39 am - Reply

    My son is 54 and has had cfs for over 15 years. He has gotten progressively worse and is housebound. I have read many articles about Dr. Peterson and his research, especially ambligen. I am 78 years old and very concerned about my son. He is very ill and I dont know what to do to help him. I know from articles I have read that your doctors are very compassionate. I am on social security but am willing to do monthly payments or credit cards. Will Dr. Peterson or someone on your staff be willing to see my son. I am completely devastated and would appreciate it if someone could treat him. He has not known what it is like to have a normal life. Please have someone get in touch with me regarding his care. I am desperate. Thank you

    • Cort Johnson

      March 24, 2016 at 4:26 pm - Reply

      I’m sorry to hear about your son Delva. Here is Dr. Peterson’s address and phone number

      Sierra Internal Medicine Assocs
      926 Incline Way Unit 150
      Incline Village, NV 89451
      (775) 832-0989 (Office)

      Good luck with everything!

  • Ariette Singer

    March 28, 2016 at 2:37 am - Reply

    Does anyone know if any studies have been done on allergies to drugs (local and general anesthetics, antibiotics etc in ME/CFS patients? My immune system is very weak. Since I became ill, I have been reacting to almost everything – for headaches, antibiotics, Panadene, Aspirin, Disprin and so many others – I am not taking anything to relive my various pains. These allergies are very serious problems for me as I now have 6 6 operations pending (including a a large brain tumor in my left frontal lobe and extraction of several chronically infected teeth in my upper jaw. I also have a Sinusitis, which is too close to my tumor and the neurologist said it will be a very difficult operation because of the risk of the Sinus infection spreading to my brains. I was tested to Lignocaine and had a strong reaction. After this, the Immunologist refused to test me further. I was shocked with such an attitude, and of course this is a cause for my constant anxiety. What am I to do with all these operations if I am allergic to the necessary anaesthetics and antibiotics? This is a desperate situation for all those patients who need an operations but are allergic to so many things.s there any hope on the horizon?

  • Deborah

    March 31, 2016 at 4:29 pm - Reply

    I have had Fibromyalgia for 25 years, but was doing great and coping on natural supplements and no sugar, very natural, only simple carb diet until I got the huge staph infection after hysterectomy for 7 months. I have never been a person who caught viruses, colds, yeast infections, UTI, but now I get them and it takes me twice as long as my husband to get rid of, then I am down for a week recovering exhausted from being ill. I also get sore throats now if I push myself physically, by this I mean out for the day for more than 5 hours. Even though the CBD OIL has helped my nerve pain and general feeling physically feeling better 70%. I still have no energy. I still have at every test since 1991 inflammation of unknown origin in my body. My inflammation counts are pretty high. But no one can find who he is. The spinal fluid test is probably the one test on God’s green earth I have never had. I like many of you can so empathize, I would love to have energy. Only me and my husband know how bad it is. When my daughter stayed with us a few weeks, she panicked because I got sick and was sleeping all day and she couldn’t get me to wake up. But I when I am ill, I simply can’t make myself wake, now, since last kidney infection hospitalized me 3 years ago. Dr said it would take 2-3 years to get over, still waiting while every little virus zaps me. Oh and I can’t take any immunizations, I am allergic to eggs.

  • delva alite

    April 17, 2016 at 3:30 am - Reply

    Please notify me if someone has a suggestion to what medicines, food, vitamins one can take for cfs/me. I have read many articles but it seems that they are not really close to solving this disease. What does one do to help someone with cfs. My son has been dealing with this for over 15years. He is housebound. Why isn’t more money going into research for this illness. There are many people who still deny this illness and simply think the person is either lazy or has mental problems. As a mothr\er, I would like to know if there is any way I can help or learn more in order to help my son and others who are suffering with this disease.

    • Dave Gamble

      April 23, 2016 at 9:56 pm - Reply

      Hi I am a complementary therapist and also a CFS/ME sufferer. All my advice is free..I was severely ill and housebound and after trying many different treatments I am now much recovered. I can try to help on a 1 to 1 basis by phone or email, or you can access some of the info on my website. I do hope I can help or put you in contact with someone who can. Good health, Dave

  • Rita

    May 14, 2016 at 3:40 pm - Reply

    Deborah, I am like you, except for the fact I always had some kind of infection, like bronchitis, pneumonia, Strep, severe mono at 13…and all my life it was common to have raised white blood cells on routine blood work. But I had been doing pretty good with the exception of chronic laryngitis until 43 when I caught MRS helping a women into a wheel chair that’s when all the cracks opened and flooded me with these illnesses. ..so I know what you mean about losing your life after a huge infection. I hope you get better soon!! And DAVE what is your website address may I ask…thank you. .everyone I know we all want the cure like yesterday. .years of our life’s are passing but we ate alive! Please keep the faith a bit longer we’ve come this far already…I WILL NOT GIVE IN and don’t any of youse either..like it or not we are all connected.and understand each other like family..wait better than family. We are not alone we have eachother..email me to talk any time at justadream123@icloud.com. ..Rita : )

  • Marcy Dobbs

    May 22, 2016 at 12:01 am - Reply

    There is no doubt that FM and CFS are progressive in my family. I’ve had FM for 60 years with it being very cyclical in my youth. Slowly the cycles came closer together until I was forced to retire early. I am not housebound, but my life is changed. My daughter and one granddaughter also have FM. Not a coincidence. A niece also seems to be headed toward a diagnosis. I am on a low carb, whole food diet and while I feel healthier, my pain levels have not diminished in the least. So… more help as to what to add to help boost my immune system would certainly be helpful for all of us.

    • Dave Gamble

      May 29, 2016 at 9:54 pm - Reply

      Hi Marcy, . the most well known general immune boosting supplements are ECHINACEA, GOLDENSEAL, ASTRAGALUS, and EVENING PRIMROSE OIL. There are many proprietary blends also. However the immune system is very complex and some illnesses can be caused by specific chemical deficiencies or surpluses, which in turn may be caused by gene abnormalities. It seems that there is hardly an illness that is not effected by the immune system somehow. Trying to find the exact problem can be very easy or very difficult. Some nutritionists specialise in immune system disorders.
      I do hope you find help and advice. Best wishes, Dave Gamble

  • Dave Gamble

    May 29, 2016 at 10:40 pm - Reply

    PS I have written an article about the immune system. It is too long to post here, but I can email attach it to anyone interested. Good health, Dave

  • Tammie

    July 7, 2016 at 3:06 pm - Reply

    Hi, I am 43 yrs old, I was dx with fibromyalgia a little over 4 yrs ago. Since then in my records my doctor stated undifferentiatoed connective tissue disease but has never told me by mouth. Also, I have cfs which he states goes hand and hand with Fibro. I have developed tachycardia and have ibd/ibs as well. I take close to 15 pills a day and can’t stay out longer than 2 hrs or I’m completely exhausted. If I don’t take a nap during the day I feel extremely awful. My past includes gammagloblin shots when I was younger due to a weakened immune systems. I was constantly sick with pneumonia every other 3 months as a child. Since then I have tested positive for cytomeaglovirus, parvo b19, endometriosis which caused me to get a partial hysterectomy. Before that I took a shot that I believe made me worse called lupron depot shot. I tell you all of this because somewhere in my mess there HAS to be a connection. I HATE this, I have no life and can fathom my life being this way forever. I am willing to do any kind of testing to get rid of this

    • Cort Johnson

      July 7, 2016 at 3:44 pm - Reply

      Be sure that you’re subscribed to the Health Rising blog if you’re not Tammie. (healthrising.org).

      I think they are all connecting and we’re illuminating some of the connections there.

      Check out the kind of astounding results of this poll and please register and give your two cents on the high amounts of gynecological disorders found

      http://www.healthrising.org/forums/threads/the-fm-and-me-cfs-gynecological-history-poll.2427/

    • dee

      July 7, 2016 at 5:02 pm - Reply

      hi,

      I feel for you as I came down with M.E. when 46 and just turned 65 and still FEEL awful, weak, exhausted, breathless, flu-ee, HEADACHES, etc. and housebound. I don’t think I have fibro and I know they always say they go hand in hand but NO to the drs.!

      my friend has fibro and can DO so much and feel the burn after but M.E. makes ANY movement HORRIBLE! I wish I could tell u something I take that helps BUT I can tell you that LDN helped me for 2 months and I could not believe how good I felt! that’s the only thing that helped BUT for some reason it stopped after 2 months. I felt about 80% better, UNBELIEVABLE! try it if u want to feel better for a while, maybe it’ll work longer on you! God Bless!

    • Dave

      July 10, 2016 at 9:48 pm - Reply

      Hi, I have tried many complementary remedies, some of which have helped a lot, but the next thing I am trying is THE OPTIMUM HEALTH CLINIC in London which seems to have a very high success rate by “trying everything until a helpful remedy is found”. The OHC is not cheap however. If you try them I do hope they can help.
      Best wishes Dave

      • Audrey Scougall

        July 15, 2016 at 2:14 pm - Reply

        I have been in touch wiht the Optimmun Health Clinic for some time, Have read Alex Howard’s book ‘Why ME’ Their videos are excellent, encouraging and helpful. Yes I believe expensive but people get better. In Australia I am too far away to participate, but find their emails.realistic and dealing with what is actually happening rather than lots of confusing acronyms.
        Good luck, after 30 years of ME OHC offers me the most positive outlook.

  • Johnson

    February 15, 2017 at 9:43 pm - Reply

    Have noticed that when I am ill and my immune system kicks into gear (as shown by blood work), I have less of the pain associated with FM. Much less pain. Any correlation? If anyone has experience the same or if someone reads this and knows of a correlation, please let me know.

    • Josh

      April 29, 2017 at 11:58 am - Reply

      Hi Johnson, I was ill with a nasty cold for about 1.5 weeks and my Chronic Fatigue virtually disappeared. I was thinking the opposite however, that the immune system becomes suppressed rather than the normal overactivity that I suspect it has. Whichever way around it is, there is ABSOLUTELY something to this to the point where I want to be around sick people, because I’d MUCH rather a cold/flu than CFS.

      • Cort Johnson

        April 29, 2017 at 4:01 pm - Reply

        Hi Josh. Interesting! That, of course, could make sense given Lipkin and Hornig’s findings that immune exhaustion may be present.

      • dee

        April 30, 2017 at 3:58 pm - Reply

        I noticed same thing saying that it makes room for another illness such as a cold then when cold goes, full blown CFS comes all back however now that i’m older, the effect isn’t so good anymore. :>(

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