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From Our Readers: Comments and Suggestions – 9/21/16

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Long Time ME/CFS Patient

Re: A Mestinon Miracle: Vagus Nerve Stimulating Drug Helps Long Time ME/CFS Patient Exercise

I do NOT believe your story of the Long Time ME/CFS Patient. I too have had ME/CFS for over 28 years. I was very strong and athletic. Since ME/CFS have also had Sarcoidosis, etc.etc. After years of being disabled – unable to exercise and do normal daily activities – my body lost muscle, I have become weak and debilitated, my body core is almost too weak to support me for more than an hour or two. No drug would cause me to be able to suddenly take a run or go cross country skiing. I would need gradual physical therapy possibly taking months in order to become strong enough to even walk fast for any length of time. I DO NOT BELIEVE THE STORY YOU PRESENTED – IT IS NOT REALISTIC AT ALL!! This begs to question the entire article about the Mestinon Miracle. Give me a break, I'm suffering enough without reading this kind of so-called miraculous garbage! ~ Posted by: Caha, Jul 28, 2016

I just started mestinon for extreme fatigue and autonomic disfunction (working to pin down).
It hasn't touched my fatigue yet, but I am no longer dizzy or blacking out. I did think I may need to quit, because I felt like I had breathed water into my lungs but that has largely diminished.
Hoping it still will help the fatigue soon but not holding my breath, it's been over a month. ~ Posted by: artburk, Jul 30, 2016
Here we go again. Another invalid use of a valid therapy (vagus nerve stimulation) riding on the back of a valid HYPOTHESIS (vagus nerve infection). Are you really going to stimulate the nerve that may have an infection? Really? Or is damaged or scarred by an infection? Really?

This needs to stop. Using Rituximab for therapy in a clinical setting is also wrong. No one should be using this drug in a clinical setting for ME/CFS even if research is showing a response. THAT IS RESEARCH and they have not drawn any clinical setting use and the very researchers that discovered this response have warned against its use in a clinical setting.

Oh yet another patient (ONE) apparently helped by a therapy for ME/CFS in some sort of clinical setting. 

Stop. Just stop. ~ Posted by: TZ4, Aug 20, 2016


Re: Laggard: Is an Under-Active Brain the Problem in ME/CFS?
tried to understand article, I did my best at trying to get WHY I can't respond anymore! very slow reaction time. only since M.E. :>( ~ Posted by: Deadinbed1, Jul 30, 2016

Well written – bring to your doctors and give to family 

Re: Why Is Chronic Fatigue Syndrome Still a Mystery?

Why aren't more articles on ME/CFS written this way? 

Keep this in mind writers. First, patients have to be able to read them. Second, we need something for a doctor to read quickly on our visits and for family and friends to read without being put off. Third, no one is interested in your knowledge or writing skills (or lack thereof) so please KEEP IT SIMPLE!

Start writing for people that are sick and their cognitive skills will not allow them to get through an article and for people that are not sick but have no general interest in reading about our disease but will look at a well written and brief article. ~ Posted by: CDW12, Jul 31, 2016

I have noticed Chronic Fatigue used in place of Chronic Fatigue Syndrome in the media, especially the British newspapers. (Also a lot of British patients.) I think this was probably given a wink and a nod by British psychiatry to further confuse CF the symptom with CFS the disease which only helped their agenda of burying a disease to keep ME clinics, PACE Trial, GET, CBT and the insurance companies afloat. ~ Posted by: CDW12, Jul 31, 2016

All the symptoms

Re: Paul Cheney's NMH (Neurally-Mediated Hypotension) Treatment Protocol for Chronic Fatigue Syndrome

I have all these symptoms, I've seen many doctors and the conclusion is: nothing wrong, after several months. I'm going to see a new cardiologist and I'm going to show him this article. this time I'll request a stress test. ~ Posted by: regina75, Aug 7, 2016

Extreme Heatwaves and ME Tips and Tricks!

Hi this is Susan from Ontario, Canada. I am a long time ME sufferer. I just wanted to highlight weather problems today given the unrelenting heatwave here we have experienced almost all summer long now.

I get super sick at this time of the year. I wonder if other ME-ers also suffer with the high heat and high humidity? It's been going on here since June.

I find symptomatically that my appetite is lost all day and that I am able to eat when it is dark! I do not even have to go outside to know it is a brutally hot day outside. I wake up with stomach cramps, migraines, diarrhea and horrible nausea and I have not even set a foot outside the door! The ME body KNOWS though! I sleep with a fan and in air conditioning downstairs and upstairs my family has central air. I drink 8-10 bottles of water daily with Electrolytes and I still am acutely ill in this brutal weather. Currently I daily dine on Gravol, an anti nausea drug, Immodium, Gastrolyte and my migraine meds. Having type two diabetes from the ME does not help!  Right now, it's a coolish  and slightly breezy 80 degrees outside so I sat outside for ten minutes. Then I came in sat on the couch and had a such mega heat flash that it was frightening. I just spoke to my wonderful regular pharmacist and he said that I am doing everything right, yet, I am sick as a dog. Yes, I am menopausal too. I bought an expensive electronic Canadian made device called a Menopod that temporarily cools you down. I find the heat very hard to control its effects on my system during such weather extremes. And I am so fatigued I sleep much more than my usual 11-12 hours per day. Muscle ache more than usual as well and my chiropractor has a tough time getting a release on my adjustments because the muscles become so hyper sensitive. There seems to be a lot of stuff going on in my body when the heat hits the fan so to speak.

How are you guys coping in this ferocious heat? Any tips or tricks? I would love to hear from anyone else who gets it also so severely. Heat is my total enemy! Looking for real estate in Iceland…! People think I am nuts praying for an ice cold winter. I can been seen on the coldest days in a flimsy t-shirt outside walking around! How do people in sunny climes like California survive this year round?

Thanks for any advice here. I am having a lousy summer by not being able to do anything but sleep and be sick when I am awake. So please do keep extra Kool my dear cucumbers and please stay well. Love and hugs to my fellow ME-Ers and to Pro Health for the support and comfort it has given me over the years (diagnosed in 1995).

Thanks for hearing me out on this vexing issue.
My love and my best Cheers to you all,
Susan Engel

Sent from The Great Gazoo!

More of the same 

Re: Enhanced psychological flexibility and improved quality of life in chronic fatigue syndrome/myalgic encephalomyelitis

Perhaps substantive study's would be more productive and less wasteful of research money. This being considered CBT(cognitive behavior therapy) which has already been proven to have limited benefit, no more than with other chronic conditions, and already studied many times, I am not sure what this study is trying to accomplish. I also question the definition by which patient selection was made as it is not listed. If was the Oxford case definition or one like it the study is invalid. This path has been already explored thoroughly ~ Posted by: jadam914, Aug 20, 2016

"choosing whether to change or persist in behaviour in response to those experiences. "

Another term for treatment for psychological flexibility is "blaming the patient". 

Do you choose to get the flu? To get pneumonia? Did you choose to rest and possibly reduce your exercise while you recovered? Do you feel that you were wrong to do so, and that you need to get counselling for "persisting in behavior in response to those experiences", because you made a sensible decision to adjust your "behavior" due to your VERY REAL AND SEVERE illness. 

There is a great deal of evidence that CFS/ME is a condition resulting from action of the immune system, which is exactly what causes people to feel so debilitated by the flu. 

CFS/ME patients are very ill, just like flu patients are. Their illness does result in changes in behavior, just like people who have the flu, who rest and drink fluids. These changes in behavior are not the problem. The problem is the illness, itself. If the underlying illness is effectively addressed, the changes in behavior resulting from the illness will be addressed — NOT THE OTHER WAY AROUND.

So — we need to stop wasting money on useless research like this, and target that funding towards finding the physiological causes, and potential treatments, of CFS/ME. Instead of telling severely sick people to exercise more, when we know that these patients have abnormal results in recovering from the 2-day exercise test, we should be trying to find out what is wrong with them, and help their bodies to heal. ~ Posted by: dfwmom, Aug 21, 2016

Recheck evidence 

Re: Do evidence based interventions for chronic fatigue syndrome improve sleep? A systematic review and narrative synthesis

As GET is not evidence based treatment and proven damaging to suffers that fit any expert and/or ME/CFS community accepted case definition and the study's that this draws from are likely using a definition that includes other conditions this would be unproductive. Studying sleep as it relates to CFS with paced exercise and CBT(however limited it's effectiveness) could be beneficial.? ~ Posted by: jadam914, Aug 20, 2016

Actually, despite the low reviews, this is a solid, abstracted article; one that reveals another interesting facet about me/cfs and its unique symptoms. 

The researchers wanted to see how sleep was affected by GET and CBT therapy in subjects with me/cfs. Now, in healthy people, exercise usually improves sleep. But the researchers didn't find that. Instead, they found the results to be inconsistent enough to suggest more studies focusing specifically on sleep were warranted. 

To me, this study is useful in two ways: it highlights an under-researched area of me/cfs symptoms and further points out the weakness of the PACE experiment's conclusions. ~ Posted by: BarbRishaw, Aug 21, 2016

Is it any wonder? 

Re: A UK based review of recommendations regarding the management of chronic fatigue syndrome

With what can be considered years of abuse from the medical community at large to include the trivialized renaming, intentionally broad definition(leading to other conditions being included), disregard for patients, neglect, lack of funding, and most applicably the miss education in the medical community (especially improper psychological labeling) that there is a huge rift? The UK is among the worst offenders. ~ Posted by: jadam914, Aug 20, 2016

AntiRetrovirals vs Pace/Lipkin 

Re: Tribunal Orders Release of PACE Data

An exogenous replicating pathogenic retrovirus was identified in Melvin Ramsey defined ME by way of the equivalent modern day rigourous CCC Canadian criteria in a paper published by Dr Judy Mikovits and leading HIV/HTLV researcher Francis Ruscetti in Science in 2009. 

Insufficient replication attempts including a definitive mbio 2012 Lipkin led paper failed to do justice to the complexity of the original 2009 paper which remains Top Flight upper echelon research.There are credible reasons according to one or two authors of that mbio 2012 Lipkin paper to believe that the 2012 paper was fraud in hindsight.

I am better on 245mg Viread and 800mg Raltegravir for the Myalgic Encephalomyelitis defined above, four days per week on those antiretroviral medications. A few of us have called the bluff of Lipkin and of the Pace Trial authors too..

Game is up guys. We got you. All of you. Shame on you all. We did everything but fold faced with your intimidation and bullying keeping us all sick for so long while you tended to the fatigued and made this illness out to be something it is not to include more patients and to dilute it and confuse it with psychology and bogus overlapping fatigue word clinical state markers and your faked compassion, tv shows et cetera.

All in. Viread, Raltegravir chips All In. Hear it well. Just finally LISTEN to us. That is all. We called your bluffs – elite virologist hunters and psychiatrists. Game is up now.

Just like HIV patients we are learning how best to take the medications and getting there. Sometimes failing on them, as do the HIV patients. Sometimes winning, as do the HIV patients.

But learning, just like the HIV patients, over time, how best to take them, retake them, and over time winning and getting better with antiretrovirals and other immune modulating drugs given in HIV and related disease.

It's a RETROVIRUS. 30 years on from HIV. Deal with it. ~ Posted by: SpartaK, Aug 24, 2016

It's good to see the empirically valid patients coming first and not the back-room-swindler-Dr-Corporate-crony-Money-Clubs. Whenever the medical establishment is at odds about something they can't explain, they default to the standard "graded exercise and cognitive therapy" BS. It's not different than when it was thought that masturbation caused blindness. It really is that moronic of an excuse and is treated like it's some kind of super-science worthy of respect. It's like they have to say something that sounds half way intelligent or else be found out for the frauds that they really are; paid-for academic stooges for their corporate masters. If we only knew the back stabbing and injustices that are happening around ME, they would need more room up in the Tower of London to keep them shackled. ~ Posted by:  headsails@gmail.com, Aug 24, 2016


Re: Neurocognitive improvements after best-practice intervention for chronic fatigue syndrome: Preliminary evidence of divergence between objective indices and subjective perceptions

So they're saying expert and patient opinions, clinical, anecdotal, and other studies evidence are all wrong? I think it's time to start sending some people in the Psychiatry field to the unemployment line as they're doing more harm than good. Maybe using an expert accepted case definition and be helpful too. ~ Posted by: jadam914, Aug 22, 2016

It's simple 

Re: Cognitive behaviour therapy for chronic fatigue syndrome: Differences in treatment outcome between a tertiary treatment centre in the United Kingdom and the Netherlands

Wildly varying diagnostic criteria and poorly run studies account for the discrepancies. Cognitive behavior therapy in properly run studies has shown no more effectiveness with chronic fatigue syndrome than any other chronic condition. It would be far more productive to do physiological studies on this proven physiological condition. One has to wonder if he studies are not done to keep people in the psychiatric field out of unemployment line. ~ Posted by: jadam914, Aug 22, 2016

Herein lies the problem 

Re: Case definitions integrating empiric and consensus perspectives

First patient category is created by the worst of the watered-down and unaccepted definitions by true experts. The second patient category is non-existent by even most, unscientific and unreasonable case definitions. Both in my opinion are counterproductive, useless, and muddy the waters. There's some debate that the 3rd and 4th categories are one in the same, a subclass of the other or a parallel disease. These categories are derived from expert accepted case definitions. The Chronic Fatigue Label must be severed from both the third and fourth categories because of the destructive and trivializing nature of the name. ~ Posted by: jadam914, Aug 22, 2016

Patient vs Swindler 

Re: PACE Trial Blasted at Statistician's Conference By Award Winning Journalist

It's good to see the empirically valid patients coming first and not the back-room-swindler-Dr-Corporate-crony-Money-Clubs. Whenever the medical establishment is at odds about something they can't explain, they default to the standard "graded exercise and cognitive therapy" BS. It's not different than when it was thought that masturbation caused blindness. It really is that moronic of an excuse and is treated like it's some kind of super-science worthy of respect. It's like they have to say something that sounds half way intelligent or else be found out for the frauds that they really are; paid-for academic stooges for their corporate masters. If we only knew the back stabbing and injustices that are happening around ME, they would need more room up in the Tower of London to keep them shackled.  ~ Posted by:  headsails@gmail.com, Aug 24, 2016

Hope and pray 

Re: Will 2016 Finally be Montoya's Year? Taking Stock of the Stanford ME/CFS Initiative
As a CFS patient for 30 years, I hope and pray that the studies are fruitful. The time has come for all of us to have real answers. ~ Posted by: jaime69, Aug 24, 2016

Help Needed

Re: Neuromuscular Strain in ME/CFS

My brother is suffering with this illness, he is so tired and run down, I am very afraid for him. He has a family, a little girl and two older sons and I do not want him to miss out on seeing them all grow up and get out on their own! He is on so many different drug protocols which probably add to his demeanor! Is there a cure for CFS, is there one in the works, I love him very much and I can bear the thought of anything worse happening to him, our mother couldn't survive it. What, if anything can I do to follow-up with this? Could you let me know please? Thank you for your time & consideration… Posted by: LauraSavona, Aug 24, 2016

I too have CFS. I am now a single mother with three young adult children and a 15 year old daughter who was 5 when the mother she knew began to change in ways that frightened her. Now, she can't remember me as a healthy, active, fun loving mother that she used to brave the Alaska Bush with. Just us. I didn't know what was happening to me and neither did my doctors. I had no help so I pushed myself to keep going, until my body of brain gave out and I would fall into a state that looks like sleep, but it's not true, restorative sleep. It's more like losing consciousness with no forwarding…and I will surface enough to feel horrible pain and be aware I needed help, but I couldn't wake, or move. I'd sink back into blackness. It's terrifying to be the person who is experiencing this, and terrifying for the child that cannot wake you up. There is no test or treatment for this disease except radical acceptance that you will get worse if you keep pushing, so you must be on as much bed rest as possible. If that is done in the first 3 years of onset there is a better chance of remission or recovery. If you are not aware of this necessity, the prognosis is not good. I was forced to do too much for 2 years, then I got a diagnosis and a caregiver which allows me to stay at home. This was in 2008. Being single I have had to take care of my daughter and when I couldn't she spent days with relatives while I cried from the pain and floated in and out of unwanted "sleep". That was in 2008. Now I'm almost totally bedridden and can't be upright for more than 5 minutes. It's been this way for 3 years now…and all because I had to push myself. Now I can't "push" through anything and thank God my child is older and can cook and clean and care for her major needs. She cooks for me. She is a wonderful young woman! I know this isn't a fun answer to your question. But it's important to be aware of the reality of what this disease can do…so don't push it. I encourage you to research and educate yourself on recent discoveries and studies. The Institute of Medicine released their findings from the first large scale study on CFS (I have ME-CFS, not all CFS patients have ME) in October of 2015. It's an important report! Our government in the US is not taking the Institute of Medicine's suggestions to heart,cand have not included the findings in educational materials for doctors. Congress cut the meager funding we'd been allowed for research into this illness. They literally cut it out of the budget. We got $0 for research. Hay Fever, however, was funded generously. Become educated and advocate for your ill brother. Research 1st is a fabulous place to get your accurate facts with no political or special interests spin. They report the latest, ongoing and upcoming studies. there is a bio bank patients are submitting their own samples to for researchers to study in large studies and it is resulting groundbreaking findings! That would be the best a good sister can do. It is what we desperately need. Good luck!! I hope his story does not come to mirror my own. He just rest…even if he feels good! Otherwise he will end up in a push-crash cycle that has serious repercussions. ~ Posted by: MaschelleMEcfs, Aug 25, 2016

I've had CFS for 26 years. NO – there is not a cure – or a valid treatment at this time. Anyone, physician or otherwise – who tells you different does not know what they are talking about. The stats have changed over the years, but most people do not recover. When I first started dealing with CFS, there were reports of people getting better at the 6 year mark. Didn't happen for me. A small number of patients spontaneously recover for no apparent reason. I spent years looking for answers, treatments etc. with no success. The Nightingale Institute of Canada does nothing but Research on CFS/ME and gave me the best and most realistic answers and prognosis. Some people claim a variety of things help-maybe for some – not me. Most doctors still have little or no knowledge about CFS. A friend at church actually believes she had CFS "for a little while" cos her physician told her! Nevermind that a major criteria for diagnosis is to have had it for AT LEAST 6 months! I came across this ProHealth site by accident and will say they have some helpful information & I appreciate that. But go to http://www.nightingale.ca/ for the most comprehensive and accurate information. I was lucky enough to attend a seminar by their founder, Dr. Byron Hyde at the beginning of my CFS and everyone there (including children) kept *gasping* at everything he said cos so many things finally made sense to us! I truly believed there was light at the end of the tunnel for 20 years! I stayed hopeful and optimistic, probably due to my Faith. But I have since given up. I do not believe anything worthwhile will be discovered and proven effective in my lifetime. I'd love to be wrong, but after 26 years – it's highly unlikely. So, if there is any advice to be given for your brother or new CFS sufferers – it is to be realistic and try to ADAPT. The more you physically fight – usually the worse you feel. Try new things if the are medically recommended but forget the fads. That's all they are. Don't take any one person's opinion, diagnosis etc as absolute – including mine. But for the long haul – I guarantee you that ADAPTING is the most helpful thing you can do. Do NOT do things you know will exhaust you! For me – talking out loud is disastrous as it spikes my fever! I could go on and on but this much typing is already wearing me out. It's good to remain cheerful and hopeful as long as you can. But don't fool yourself and don't play guinea pig. Don't feel bad about needing huge amounts of rest/sleep!! It is actually the BEST thing you can do for yourself. It is supremely IMPORTANT that you do NOT try to PUSH through CFS!! It can't be done! That's a Medically Documented proven FACT. It can make you permanently Worse! Don't try to be a Hero or Martyr! There are tons of info out there but you cannot read it all – don't even try! Lastly, if you try Supplements – ONLY take ONE at a time for about a month! Your system is compromised and you need to be careful to not get sick and need to know what does or does not work before trying a second supplement. That takes time! MY system could not handle any of them! I took double doses of Iron for a while and after it was in my system, I felt a tiny "lift" for about 45 minutes – then it was gone. But soon it began to cause severely painful abdominal cramping!! I tried coated pills, delayed release pills, etc but nothing worked. Now I can't even take a multi-vitamin with iron. Actually I can't even take a multi-vitamin period. Did not mean to type this much at all. Intended a quick – short response to the question. But after 26 years, my experience sort of floods out of me ha. I do hope, as bleak as I've painted this – that it may be of some help. Good luck!! ~ Posted by: CFS1990, Aug 25, 2016

I just had to say how ironic it is that while I was typing my comments – another lady posted hers — and SHE also expressed how important it is NOT to PUSH yourself if you have CFS and/or ME – or Fibromyalgia. They are all closely related. The other lady is absolutely correct in her remarks about Government funding too! It's ridiculous! I think the other lady and I say much the same thing – which is as it should be. The best thing you can do for your brother is to make sure he rests as much as he needs to! And not let him do things you both know will exhaust him. I realize with a family this is extremely difficult. So educate the whole family to the extent they can digest it. Having a Support group of family/friends definitely helps! I can't tell you how many times my best friend has got groceries and meds for me – even taking my dogs to the vet. I used to say CFS took 95% of my energy away. 5 years ago – it took the other 5%! I, also, am completely debilitated and in bed 24/7. I never do this much typing any more – but I felt so bad for you wanting to help your brother – and knowing there's so little you or anyone can do. Just make sure your brother knows you don't "expect" anything of him. You don't say if he's married – just that he has kids – so THEY need to be educated as well. I just noticed you saying "your mother" couldn't survive it. Does that mean she had it too? or that she couldn't deal with your brother's illness? So sorry either way. One last time – everyone has to ADAPT!! Don't be misled by false hope. Don't agonize over not being able to do much – it's a waste of energy. Look for little moments of joy – they do exist 🙂 ~ Posted by: CFS1990, Aug 25, 2016

2009 2010 2011 2012 2013 2014 2015 2016 2017……………………… 

Re: Lipkin's Monster ME/CFS Study: Microbes, Immunity & Big Data

Lipkin LIED obeying orders. He knows very well that Mikovits and Ruscetti isolated a retrovirus and he simply did not man up to the task but crumbled and let down a whole patient population.

If you have ME then Viread is the drug to talk about with your physician if appropriate for you and cleared with a real experienced ME specialist.

Don't wait for anybody to help you. The Mikovits Ruscetti paper came out in 2009. Don't waste your time waiting for Lipkin or anybody else to come save you or your loved ones sick with ME.

The 2012 Lipkin study was fraud. Lipkin made a false promise to Mikovits/Ruscetti that they would get a chance to isolate the virus that Lipkin knows very well Mikovits/Ruscetti have.

The two positive papers should never have been retracted.
The negative papers and Lipkin study were all multiply insufficient. Mikovits/Ruscetti were coerced and bullied into signing the Lipkin study and threatened and forced to sign BUT they were made to believe they'd get a chance later on to isolate.
That call never came.

We don't need any more science from Lipkin or any more waiting.
Real ME gets better on Viread. Mikovits/Ruscetti did enough.

Time for Lipkin to step down and to shake the hands of the patients who CALLED HIS BLUFF and to shoulder some of the responsibility for not standing up to his boss who did not allow a much fuller and more credible Lipkin study. The list of things wrong with the Lipkin study is long as it is for the negative studies.


All on the record. All of it. Time for realization of what really went down here.

The public need to make a stand. 

This story is over.The patients won it alone. They asked for help. They got none. They and a few brave doctors saw it for what it is and helped themselves.With Viread.

Lipkin s name and big studies are such a joke and waste of money.Pure rotten garbage. Perhaps he could just be decent and honest and say he did not fully appreciate the pathological entity enough, that he lacked understanding and expertise in ME, and that swayed him in his bad choices and he was manipulated through his own fear too of the repercussions of Mikovits being right.

Charles Van Doren was honest in the end.
Will you be too Dr Lipkin?

Quite an ugly end game really isn't it?

They messed with the wrong patient group who called the bluff of the oh so powerful researcher.

Game's up. Up. Come and shake our hand Lipkin. For bravely taking the viread and finding out the truth ourselves. And tell your bosses it's all over too.

Institut Pasteur Paris retrovirologie- est ce que vous allez faire quelque chose enfin ? Le devoir vous appelle pour remettre de l'integrité dans la science ! Ne tardez pas plus !
Are the Institut Pasteur Paris ready to isolate the retrovirus and end this for once and for all? ~Posted by: SpartaK, Aug 28, 2016

with respect to the above comment XMRV was thoroughly debunked as a lab contaminant from Rats. 

I have been waiting for years for research of this quality to be done by proven researchers like this. I am donating! ~ Posted by: Mos, Aug 29, 2016

Strange stuff indeed 

Re: Researchers find herpes strain in the nervous system

See this paper from Japan:


Where a rise in HHV6 and HHV7 are biomarkers for normal fatigue. In ME/CFS their titre does not rise as a consequence of exercise. They say this can distinguish between "normal" fatigue and "pathological" fatigue. IL-1b is the probable mediator of the rise in normals. ~ Posted by: IanH, Aug 30, 2016

Daughter with CFS
Re: Iron Man: A Young Person's POTS ME/CFS Recovery Story Pt. I

My daughters case sounds so similar to Jacks. My daughter Olivia was diagnosed with EBV by infectious disease specialist after four months of the other doctors not finding anything but fatigue and low grade fever persisted. Then the EBV did not subside and other symptoms arose, it actually started attacking her immune system and she was diagnosed with CFS and then POTS. Almost a year went by, and she continued to just struggle through her POTS got better with treatment but something else was still underlying and she was struggling to keep up with schoolwork even on homebound school. So we went to the Mayo in Rochester and found that her cortisol was low. They repeated the test again and again and after we came home her endocrinologist here did an ACTH test. Ends up her adrenal glands were not functioning correctly or hardly at all and we were sent immediately for MRI of pitautary which found an enlargement of the pituatary gland. So she started steroid treatment for four months. Also she had previously been diagnosed with Graves' disease due to her thyroid levels and history in family. Since her steroid treatment she finally started to feel better and was able to complete high school and graduate on time. But it took three years of her life and it is still something we have to monitor. ~ Posted by: Maggie0422, Sep 5, 2016

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