“Antiviral therapy may be a powerful tool in the fight against SEID”. Dr. Thomas Henderson
Doctors on Missions
Dr. Thomas Henderson and Dr. William Pridgen are on similar missions. They’re both asserting doctors in their respective fields are missing the boat.
Henderson, a psychiatrist, asserts herpesviruses are a major issue in misdiagnosed chronic fatigue syndrome adolescents and patients. Dr. William Pridgen, a surgeon, proposes antivirals and anti-inflammatories are knocking down herpesvirus infections in people with fibromyalgia. They’re bucking strong headwinds for sure, but their message is getting out there, and it’s getting into surprising places.
Psychiatry journals are the last place you’d think to find an article denouncing CBT and GET and embracing antiviral therapies. Thomas Henderson just penned an opinion piece titled The Role of Antiviral Therapy in Chronic Fatigue Treatment in Psychiatry Advisor doing just that, though. When the Psychiatry Advisor’s editorial board (all MD’s) starts giving the OK to pieces like that you’ve got to think things are starting to change.
Henderson’s is the second article examining ME/CFS from a biological perspective to appear on a mainstream psychology publication in the last six months…
The IOM report may be continuing to open doors. Henderson begins his piece stating
“Perhaps the most important evolutionary step was the clear message delivered on page 15 of the introduction: CFS/ME is underdiagnosed and misunderstood.” (Underlines present in article.)
Henderson then goes on to tell them just how off the doctors in his field are. Despite the fact that many of the adolescents in his practice do not meet the criteria for major depression, many had been diagnosed with it – and unsuccessfully treated with antidepressants. (Talk about a “basket-case definition”. How many people with all types of difficult to diagnose disorders get thrown into the depression basket at some point?)
Henderson noted that all his adolescent patients experienced high rates of fatigue, exertion induced malaise, brain fog, unrefreshing sleep and impaired academic performance. That constellation of symptoms is not commonly found in depression.
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Back in 2005, Lenny Jason showed that people with ME/CFS experience significantly more
- post-exertional malaise (PEM)
- unrefreshing sleep
- more fatigued
- more confusion and disorientation
- more shortness of breath
than people with major depression. While that may not be news to the ME/CFS community, it surely is news to the psychiatry community.
- Dig Deeper: How to Prove to Your Doctor You’ve Got Chronic Fatigue Syndrome (ME/CFS) And Are Not Just Depressed
In the Psychiatry Advisor piece Henderson reported that 92% of his adolescent patients responded not just well but very well. Many of their symptoms resolved with long-term antiviral use (valtrex 1000 mg 2 x’s a day – 6 months). Vigor scores group-wide quadrupled. Five out of the seven adolescents who’d dropped out of school returned.
It was a small case-series study, but the results snuffed those of the PACE trial. In the Pace Trial – a huge unblinded study with significant methodological problems of its own (biased scoring) – a ten percent decrease in fatigue was considered significant progress.
- Check out the Simmaron Rising piece on Henderson’s study – Treatment Resistant Depression or Chronic Fatigue Syndrome? Child Psychiatrist Finds Success With Antivirals.
Henderson stated he’s getting similar results in the 200 plus adult ME/CFS patients he’s seen, and cited Lerner’s studies showing efficacy as well. Montoya’s small placebo-controlled, double-blinded valcyte study of ME/CFS patients with high EBV and HHV-6 titers was not as successful. It did find, though, that the longer the patients were on Valcyte the better they did.
Henderson’s figures seem high to me, but they undergird the need for large, rigorous studies examining the effectiveness of antivirals in these disorders. Montoya has called for just those. In a recent CDC call he suggested that this field of inquiry is still, almost thirty years later, being poisoned by the after effects of that small, three-month, unsuccessful Straus aciclovir trial in 1988.
Evidence keeps accumulating, however, that Montoya and Henderson and those proposing antiviral and/or immunomodulatory therapies in ME/CFS and related disorders may be on the right track
Antivirals and Immunomodulators?
Antivirals may be doing more than just impacting viruses. Montoya suggested that the immunomodulatory shift (to Th1 functioning) he observed might be more important than the impact the drug had on the viruses themselves. That’s an intriguing suggestion given a recent finding that ganciclovir – a Valcyte prodrug- is a potent microglial and neuroinflammation inhibitor.
As Hornig recently noted most pathogens require a immune dysfunction or weakness to exploit. If ME/CFS or parts of it are pathogen or immune-based, then immunomodulatory treatments that return the immune response to normal may be the best long-term answer.
The immune system is so complex, though, that simply characterizing what a normal, healthy immune system looks like is beyond us at this point. Work on that is underway at Stanford and other institutions. Thankfully, Mark Davis – who is now engaged in what may be the largest ME/CFS study ever – is including chronic fatigue syndrome in that work.
An article appearing just a couple of days after Henderson’s piece on Psychiatry Advisor indicates the psychiatry field is getting the message as well.
In “How Neuroinflammation May Play a Role in Mood Disorders“, Dr. Roger McIntyre argues that the hypothesis guiding most drug development for mood disorders over the past fifty years has been played out. The monoamine hypothesis proposed that alterations in neurotransmitters causes mood disorders. It’s had its successes, but many patients are still symptomatic, and a significant subset don’t respond at all.
Citing a ” highly replicated body of evidence” gathered over the past twenty years, McIntyre asserts that neuroinflammation plays a role in a significant set of those with mood disorders. They include the patients Henderson reports he is successfully treating – people with treatment-resistant depression – as well people with early life trauma and people with obesity associated depression and others.
Immune Mood Connection Growing
The immune/neuroimmune connection with many of the symptoms associated with ME/CFS and depression is clearly growing. The association of early life trauma with the later development of autoimmune and cardiovascular diseases points a finger at immune activation and inflammation. Immune upregulation has been linked with depression, lack of enjoyment and cognitive problems. Inflammation induced activation of the kynurenine pathway has been shown to reduce neurotransmitter levels.
Some SSRI antidepressants have anti-inflammatory effects. We’ll soon be presenting a story on Health Rising of a person with ME/CFS whose mood and energy improved dramatically while on a prescription anti-inflammatory.
Finally, McIntyre notes that many non-pharmacological approaches that have proven helpful in depression such as mindfulness-based therapy, aerobic exercise, dietary modification, sleep/ chronobiological normalization have anti-inflammatory effects.
All depression is not associated with inflammation, but a good chunk of it, perhaps 30 percent, appears to be. With high rates of mood disorders found in ME/CFS/FM one wonders if the percentage of inflammation induced mood problems are very high indeed in these diseases.
Changes in the Wind
Options are opening up. The conceptions of ME/CFS/FM and depression in the psychiatric world appear to be slowly changing. With so many ME/CFS and FM patients getting dumped off at a psychiatrists office at some point, Henderson’s opinion piece may be a crack in the door in just the right place.
Psychiatrists and pyschologists are in the business of helping people. They must be tired of running into a dead end with their treatment-resistant patients. Hopefully Henderson’s opinion piece will point some of them in a direction that proves fruitful for them and their patients.
Meanwhile, McIntyre’s piece suggests that Henderson and Montoya and others looking to the immune system for answers for symptoms like fatigue, brain-fog, mood changes and sleep problems may be in the right place as well.
If you’ve tried any of the antivirals mentioned in this blog please share your experiences in Health Rising’s new Treatment Review section for Valtrex here and Valcyte here.
Markedly disturbed immune signature in CSF with a shift towards a pattern associated with autoimmunity in #MECFS
Times are changing. Maybe the victim-blaming will stop. 🙂
It’s a nice start! I’m shocked Psychiatry Advisor would OK an opinion piece like this. Things have got to be changing. New perspectives are opening up…It’s a good sign.
Not shocked, many years in the making and long overdue. But very nice anyway especially if you read the crap by professor Chalder 2 days before ( http://www.news-medical.net/news/20150324/Exercise-and-chronic-fatigue-syndrome-an-interview-with-Professor-Trudie-Chalder.aspx
) who even ignored her own rapid response in the bmj from january 2015 !!!
Yes! At a neurologist (he doesn’t say but he’s also a psychiatrist) kiss-off appt I brought a strongly pos tilt-table test, had test results that showed hormone dysregulation, I get PEM, had a test that showed dysbiosis, had a test by a learning specialist at a local college that showed slowed processing speed, I get PEM, and later had a strongly POS SIBO test and a VO2 Max exercise test that showed I hit anaerobic phase too fast…and I get blamed for illness. That frequent infections and everything all together is a coincidence, incld low white blood count and very swollen and red tonsils for mos and feeling like I had the flu for mos at initial onset at 14 (I’m now 23). I gave him every chance, provided the IOM report (he squirmed terribly after handing him that!), subjected myself to a difficult appt to do so in effort to try and help prevent him putting others thru the same hell he put me through…all for him to say it was clear to him it was psychosomatic b/c I was trying to convince him it was not…I haven’t taken a logic class…but it doesn’t take a mental giant to know THAT’S FLAWED logic! Complete lunatic, narcissist, with grandiose thoughts of himself. I plan on mailing him the recent Columbia/Stanford/Simmaron-Dr. Peterson blood and CSF cytokine findings and reporting him to the CA med board w/ strong words, as he went beyond and was also abusive in language, treatment, and an effort at embarassment. I THOUGHT he was “treating” me for the illness I was already diagnosed with…meanwhile he secretly had his own agenda and I got sicker and sicker until a complete relapse. Btw, his exercise recommendation was a part of my relapse and major pain at onset of relapse.
I’m very impressed by your level of knowledge about the medical/scientific aspect of the illness. I’ve been suffering from it since 1980, when no one knew a thing about it. This doctor’s outrageous response was the norm, at the time. But that it should still happen now that people have at least a slight notion of the problem (one should hope) is scandalous. I have my own theories about his reasons, speculative of course. The fact that you are a woman, and that you show such literacy on a topic he is supposed to master must have kicked something in the gender defensiveness department. Of course, in addition to this possibility, he is clearly an insensitive and ignorant b…d. We have to meet so many of these people before coming across more understanding doctors.
Don’t lose faith. Time is in our favor (though I don’t have that much time left!)
Your diagnosis of narcissism is on the money (but so many doctors do share that trait.) Don’t waste too much time with him, I believe that the more you show you know your stuff, the more insufferable he’ll be. Then again, I may be wrong. I wish you every success, and first of all, less pain, and an improved health.
PS By the way, exercise (which every doctor recommends for me) only causes flare-ups for me!
Thanks for another great informative article Cort.
I’m curious about if you or anyone has tried Valtrex or similar? I read it has potential heavy side effects? Do you think this is a medicine one has to stay on to maintain benefit or can you eventually go off and still do well?
valtrex is generally well tolerated. when i relapsed severe last year – finally figuring out what was wrong with me all of these years, i initially responded very well to valtrex & i titrated it in slowly up to the amount per lerner’s protocol. i was reactivated in ebv, hhv6, cmv.
personal circumstances meant continued stress that culminated in another relapse.
i have just tried valcyte & was not able to tolerate it per lerner’s protocol of 450mg then jump to 900mg after 3 days. i suffered on that drug for 41 days before he pulled me off. i know many people who have been helped by it. i think if i could have come in lower dosing – titrating slowly i may have been a responder. instead i am dealing with what feels like permanent PENE.
it was after my experience that i learned montoya had modified his protocol for that drug.
Thank you for the info you shared. I appreciate it!
I just started on Valtrex with Montoya’s group: 500 mg 3x per day. No problems at all so far. They started me out slowly- once a day, then twice a day and now I’m on the full dose.
Dr. Henderson diagnosed my ME back in January 2011. I went to Cerescan for a SPECT brain scan and he was the doctor that read my scan and diagnosed me. He told me all diagnosis prior were not present in that brain scan but a low grad inflammation was. He placed me on 2 grams of Valtrex daily and within 6 weeks I had drastic improvement… They then saw my progress and called me back in for a testimony for them… He is a smart, smart man… Francesca
How about that Francesca – you know Dr. Henderson. Somehow I am not surprised.
He was the first doctor to diagnose me correctly. He put me on Valtrex and then told me to find an expert. Dan M. referred me to Klimas and the story begins..
Is that the same inflamation he saw on the SPECT scan like the Japanese study? Did they use any ”contrast agents” on you before you go into SPECT scan?
Will look forward to the story of the person on the prescription anti-inflammatory. I took indomethacin for a swollen toe and felt so much better on it-much more energy and much less pain. Was told not to stay on it for more than 10 days due to the possibility of damage to the stomach. I have wondered ever since then how large a part inflammation plays in my illness.
Susan, just take care to separate information on Valtrex (valaciclovir) from Valcyte (valganciclovir). Valtrex, as far as I have seen, produces minimal side effects. My own experience (on it for over a year now) supports that – I have not identified any side effect at all. Valganciclovir on the other hand can have significant side effects and the benefit vs cost to health needs to be weighed much more carefully. I was prescribed Valtrex due to constant cold sores, starting some six months after CFS onset. It does largely prevent the cold sores (although only just, if I miss even one day of the Valtrex I get a cold sore). I think it also helps me feel better generally. I think a trial of Valtrex is a good idea for people with CFS. I have been on 1000 mg a day – I am thinking I should try a higher dose for a while.
Thank you Maree!
“…Finally, McIntyre notes that many non-pharmacological approaches that have proven helpful in depression such as mindfulness-based therapy, aerobic exercise, dietary modification, sleep/ chronobiological normalization have anti-inflammatory effects…”
Certainly a good description of most of what I say has caused improvement in my fibromyalgia!
But if there was a pill that would do it…?
I think you’d probably take it:)
I know one person who had taken Valtrex for years. He showed up in Dr. Montoya’s office – and was clearly on his way out. Montoya immediately switched him to Valcyte and he had the most astonishing recovery. He’s still on the drug – he’ll probably never go off it.
Amazing story. I have no idea how often that happens….
I spoke by phone with Dr. Henderson a while back and he said that he would call my physician, but my doctor never mentioned anything, so I sent him the url to this article. I’m sure I’ll just hear crickets again.
I’m not surprised at all that something like a herpes virus underlies this thing, but I did have a blood test years ago for herpes and it was negative, though the virus must be in the nervous tissue and not always show up in the blood. Certainly the symptoms are very virus-like.
I followed Dr Lerner’s antiviral protocols for almost 3 years, with little to no improvement. I had already been ill for over 10 years when I started w Dr Lerner.
It sounds like you gave it your all! Sorry it didn’t work out.
Thanks, Cort. Have you tried anti-virals?
Have you tried anti-virals?
Uggg….the computer kept telling me my comment failed to post….sorry for repeat messages
I injured my tailbone some years ago and noted the 3 day course of 75mg slow release voltaren hugely improved my CFS. I reported this back to my gp and she has been prescribing it since. It’s not perfect , but when I’m good I’m really good, but I do have bad patches still. Would love to add valtrex or valcyte to this. Gp is worried about effects on gut but have told her my gut no different infact it has kinda helped.
I got my partner to try it ( he is really vv ill). It is the only thing to have ever effected his CFS. Unfortunately , he became horrendously allergic to it and all other NSAIDs . He is now completely bedridden whereas on the diclofenac he was mowing lawns , painting my house etc etc. the change was dramatic in his case – he got to taking 75mg twice a day. He went from housebound to action in about 5 days.
Did you have much joint pain with your ME?
yes i had some joint pain and Al had way more. We however showed nothing wrong on all rheumatology testing (ANA etc). What was fascinating was that the FATIGUE was helped. It was totally unexpected that energy would be helped. Pain was helped first and then fatigue/energy. It wasn’t perfect by any means in Al’s case but as I say he “felt” so much better and had a life. He could nap properly as he felt normal tiredness after doing something. This sodium diclofenac is the slow release stuff. We had no effect from taking the OTC stuff. Its like its a different drug.
Some of these antivirals have been shown to be effective against neuroinflammation. Benefits obtained are often likely due to those effects rather than antiviral effects.
We really really really need to move away from the false viral leads. 25 years and counting….
It’s wasting precious time and money.
Does no-one else around here think also think viruses are not the problem in illness perpetuation???? (I do think they are a trigger)
I truly don’t believe that my case of ME/CFS was caused by a virus. I personally became ill after pushing myself beyond my own mitochondrial limit with aerobic exercise. Also, zero calorie Diet Coke had just been introduced to the market and I was consuming way too many of these (poisonous to me) aspartame-laden drinks. This is when I became extremely ill with ME/CFS; about 30years ago.
It seems it’s always the down-regulated immune system and virus that can’t be defeated blamed for most of today’s illnesses. Autoimmunity has yet to be embraced by the medical community as a category of disease. The fact that women have enhanced immune systems compared to men increases women’s resistance to many types of infection, but also makes them more susceptible to autoimmune illnesses, including ME/CFS.
One day, it will come down to a genetic predisposition towards autoimmunity and many triggers as the cause of ME/CFS. In some people that trigger may very well may be a virus; or something else that causes the immune system to go haywire eg a chemical, or aerobic exercise (mitochondrial limit). I just don’t want the research to be only focused on this virus that can’t be defeated theory, either.
Maybe yes, but something has caused the neuro inflammation, which could be immune activation eg Montoya ( but not the new lookin study if I’m reading it correctly). All the anti micro glial inhibitors help me btw
I know 1 ME patiënt who gets Valcyte and she is better for 80%, before Valcyte she wasn’t able to do anything. I am 100% sure that this drug can help for the right patiënt mostly with high titers to EBV.
I had two Psyhciatrists put me on antidepressants for “major depression”. The question I kept asking was “why am I experiencing PEM”? They didn’t know why but insisted if I did “my part” and exercised I would see improvement in my mood, energy level and stamina. Of course this protocol left me attached to my mattress for days! PT would keep me down for weeks! It was my fault that I wasn’t getting better!!
I knew I wasn’t lazy and I knew I wasn’t depressed, taking matters into my own hands I discovered Health Rising. Now I eagerly await the results of the next trial study and look forward to the new findings about this complex disease that Cort will put together and present to us in a way that I can understand allowing me to have hope and being a participant in life again! Thank you Cort. Thanks to all of you who have contributed by commenting about your findings and sharing your stories about FM and SEID.
Having suffered for over 20+ years, possible 50 years (am 63 ), I started with Dr. Lerner and his protocol in January 2014 with 330 mg Cidofovir by IV every 2 weeks for 9 infusions, followed by 3-450 mg Valcyte tablets per day, increased to 4 per day. At time of initial exam, I was a 2 on Dr. Lerner’s scale. (Will not tell you how many painkillers, etc I was on!! )I am now a consistent 7 and still taking Valcyte. My side affects have been weight gain and very dry skin, hair and nails after having been oily all my life. Thankfully, My Herpes Virus 6 has decreased, which is my primary medical issue. My blood work is incredible healthy outside of the Herpes 6.
I believe the longer you have suffered and pushed through, the longer it will take for Valcyte to work. It was 3 months before we saw a noticeable change for me. However, I did go backwards when I had to care for our daughter who has Lyme and CFS due to the Lyme, also under Dr. Lerner’s care. Pacing continues to be the key!!
I also use an Atlas Orthogonal Chiropractor and an acupuncturist to augment this protocol. 6 months into my treatment, I had my first gallbladder attack, a common Valcyte symptom. Acupuncturist added Dandelion and Burdock roots in liquid form and have had no other issues.
Hoping this info might help someone. We are all different which makes the issue that much more complicated.I usually do not comment as my brain fog finds it difficult to understand the medical lingo, but I am grateful for you, Cort!
Does anyone know if taking anti virals will “mess up” future viral testing? I’m on the wait list for Stanford and from what I can tell the visit will consist mostly of having a lot of blood drawn looking for viruses. I have a doctor who will prescribe them and with worsening health and a wait of 6-12 months for Stanford am thinking of going ahead with it. Called Stanford and the gal said they can’t give me any info re this…
I wouldn’t necessarily wait for Stanford. After they take all the blood tests, its another month before they look them over and you get your evaluation. I do think it might interfere to take antivirals with your blood work results, but your doctor who will prescribe them now should know the answer to that question. Also if you start the antivirals you will still have more information to take to Stanford in terms of how you react and what you have tried which I would think would be helpful information for them.
Just my thoughts.
In my opinion, YES. I was placed on Valtrex 2 grams daily. Then HHV -4-5-6 tests were run. HHV-4 came back activated, HHV-5 never had and HHV-6 came back 3.1 when 3 was the highest of normal and above 3.1 was activated. My primary care doctor said I never had HHV-6 but Klimas disagreed. She said, Francesca you taken Valtrex and your positive change is because it brought down your HHV-6 titers. If I had seen you before taking it, it would have been triggered as Valtrex helps HHV-6. The slight .1 over the limit reflects that it had been higher…
Thanks Sandra and Francesca, that’s a good point Sandra re having more info for them but I’d really like the blood work to not be affected. I was going to ask this doc but thought some other opinions or experiences might be helpful. I don’t know why someone at Stanford couldn’t tell me what they’d prefer. I took the referral forms to my regular PCP on Dec. 2 and found out a few weeks ago that she hadn’t sent them in nor could the office even find them. I took another set in and a week later they were still sitting on her desk. I’d recently gone to a doc who deals with chronic illness so took them to him and he got right on it, but now I’m 4 months behind where I would be. I’m surprised Sandra that it takes yet another month for results to be looked at – have you been there?
Nice to see you on the boards Francesca and I hope you’ve been feeling better – I remember last spring you weren’t doing so well….
I took my daughter to Stanford to see Dr.Montoya and the lab work took about 3 or 4 weeks to come back so it just takes awhile to get all the results and then you have a follow-up visit. I’m surprised too that Stanford won’t tell you before your appointment whether they want you to take the drugs or hold off on them. Usually Dr. Montoya has an assistant you can email to answer these type of questions. Maybe you can call and find that out? You probably already have, but its just a suggestion. I used to know the email address and person, but that was a few years ago and there is someone else there now. I had an appointment, but I didn’t keep it because I don’t do well with antivirals, and decided to wait until there was more research and treatment options. I see a different specialist in Northern CA who knows what’s going on with all the research so I figure when there are treatments available that might help me he will know about them.
You’ve given me some things to think about Sandra – thanks. I also think I’ll call again — could have gotten the wrong person. Are you taking anything now that is helping? I’m currently on the K-pax and ritalin which isn’t doing a thing so far.
Oh gosh I wouldn’t know where to begin on this blog with what I take. That would require a separate conversation or email. Everyone is so different and I don’t know what your situation is. I can say I don’t do well on antivirals, but that’s just me and I haven’t given them a lot of time. When I start feeling awful from them I just quit because I don’t believe they will do that much for me to warrant feeling awful. I read about so many relapses after feeling awful that I’m not willing to give up my cherished good days which I DO have. If you want more info let me know and we can talk not on the blog. It would take up way too much space!
Yes I shouldn’t have asked you on the blog – I need to sign up for the message boards. If you’d want to email privately it’s firstname.lastname@example.org but only if you have the energy/inclination. It’d be nice to speak to you about the logistics of going to Stanford.
Have found this very interesting and look forward to hearing more in the near future! I have FMS&CFS&2 buldging discs! I am interested in the depression associated with FMS and until recently understood that it was part of the suffering process not the cause! However, a few years ago a Dr I had then told me I had Intractable Depression! Confused I didn’t ask what it was at that time until a few months later when I asked him what he meant, he looked quite bewildered and said “I didn’t say that did I? Answer ” yes you did!” Answer Oh! Can’t think why I did”!! No explanation but have often wondered just what he was thinking at the time when he made that devastating remark!!
Finally, McIntyre notes that many non-pharmacological approaches that have proven helpful in depression such as mindfulness-based therapy, aerobic exercise, dietary modification, sleep/ chronobiological normalization have anti-inflammatory effects
I find the above indications for “aerobic exercise” being helpful highly disturbing! Any aerobics triggers a horrible relapse in me. I can usually handle slow and very small amounts of floor stretches ok. If I don’t overdo it.
I find the rest of the article fascinating though. I have often wondered about a herpes connection. I get cold sore regularly. In fact it could even be said that a round of cold sores is a reminder to me that I am bound for relapse.
I have had cold sore all my life particularly bad at puberty. I have had CFS since the (6 weeks premature) birth of my 2nd child.
I take acyclovir on a fairly regular basis. I am curious as to where these studies will go.
But, Psychiatry needs to stop tripping over trying to get me to do aerobics!
I have had this illness (whatever they decide to name it—will not change it’s reality) for over 32 years! Dick and tired of being sick and tired….Time for some answers!!!