The next topics in the ME Associations De Meirlier ME/CFS experts video series were two big ones; ‘Treatment’ and ‘Remedy and Hope’. You can’t hope to cover the panoply of chronic fatigue syndrome (ME/CFS) treatments in a short video but the ME Association team pointed Dr. De Meirleir in some interesting directions. It was exciting, as well, to learn in the ‘Remedy and Hope’ video what this well-connected figure had to say about the future breakthroughs, some of which, he believes are just around the corner.
As always, these commentaries on the video’s a) don’t cover the entire video and b) contain commentary that doesn’t necessarily reflect what Dr. De Meirlier said or believes. Dr. De Meirleir has treated around 15-20,000 patients over the past twenty years.
Treatment Video
Oxygen
Treating ME/CFS can require tweaking a very complex system and we learned that can have unintended consequences in the first part of Dr. De Meirleir’s video series.
Take oxygen, for instance, we use oxygen to power the mitochondria in our cells. Given the low blood volume and apparently low blood delivery to the tissues, what could be wrong with taking in more oxygen?
Adding oxygen increases the release of free radicals, and if your antioxidant system is not up to par (which appears to be common) taking in more oxygen could cause problems. On the other hand, oxygen can be helpful in people with ME/CFS who are in a lot of pain and who are too ‘acidic’.
Rituximab
Dr. De Meirleir believes Rituximab is a great start but does not get at the heart of the problem for ME/CFS.
Dr. De Meirlier lauded the Norwegian Rituximab results, stating that they confirmed his theory regarding the pathogenesis of ME/CFS but noted that the patients who got better eventually relapsed and will need further treatment. Although Rituximab will knock out the defective B-cells Dr. De Meirlier apparently believes are at the heart of ME/CFS, the new B-cells that get produced will become injured over time.
The key is going to have to be interfering with the process that knocks up the B-cells in the first place. Later on when talking about pathogens, Dr. De Meirleir will indicate that he thinks an immune problem comes first. This is interesting given Dr. Peterson’s observation in the Simmaron Roundtable that removing a pathogen will sometimes correct the immune dysfunction (i.e., NK cell functioning).
Dr. De Meirleir on Treating Chronic Fatigue Syndrome (ME/CFS)
(If the Treatment video is not showing up for you on this page, click here to find it on Youtube.)
Recently I asked ME/CFS exercise physiologist Staci Stevens if she’d ever seen ME/CFS patients with low VO2 max scores (low ability to utilize oxygen to produce energy) recover their ability to produce energy. She said she has seen patients on antivirals or Ampligen return to full energy production. That suggests that, at least for some patients, the pathogen is key.
But how did the pathogen gain traction or get reactivated in the first place? That sounds like an immune problem. It’s beginning to appear that in some patients an immune dysfunction opens the door, the pathogen comes alive suppressing the immune system further, and then removal of the pathogen restores immune functioning until some situation occurs (if it ever does) that reopens the door.
Dr. De Meirleir did not say what the key immune dysfunction is. It’s pretty clear that natural killer cells are involved, but it’s also probably true that they’re not the whole answer since some patients whose NK cell functionality has increased dramatically don’t feel much better.
Dr. De Meirler does think researchers are on track toward uncovering deeper and more significant malfunctions in ME/CFS. See the biomarker section for that.
Update: The Norwegian Research Council recently provided funding for a large-scale multi-center Rituximab trial. With that trial and with Drs. Fluge, Mella and Dr. Kogelnik scouring their Rituximab patients for clues why its working in some patients, we should learn much more about Rituximab and the immune system in ME/CFS over the next couple of years.
Ampligen
Touching on the other big immune therapy in ME/CFS, Dr. De Meirleir noted he’d used Ampligen in about 150 people from 1992-2001 and that it was most effective in people with documented viral infections.
Update: The FDA denied approval for Ampligen to treat ME/CFS earlier this year. However, Hemispherx and the FDA are in communication, and hopefully they will find a way forward for this small and financially challenged pharmaceutical company to be able to do the studies the FDA wants.
Fecal Transplants
De. De Meirleir believes enhancing the gut flora through fecal transplants would bring only temporary benefits
Given Dr. De Meirleirs heavy focus on the gut, he was a good person to ask about fecal transplants. Advertised as something of miracle cures for some people, fecal transplants involve transplanting healthy, probiotic ridden fecal matter from one person to another. Think of them as a super strength probiotic. Fecal transplants are becoming widely accepted treatment for clostridium difficile gut infections and appear to be much more effective than standard antibiotic treatment.
Stool transplants had not made it into Dr. De Meirleir’s practice. He believed their effectiveness was probably due to reducing toxin load, and he believed the effects would be temporary because (again, and we heard this a lot) he felt the transplants were not treating the core pathology. It’s not that patients wouldn’t feel better with better flora in their intestines, but he felt that the bad flora would regrow over time.
Long-term Antibiotic Use
It wasn’t a big jump from a gut flora enhancer to a gut flora changer: antibiotics. We know that use of many antibiotics depletes gut flora, but antibiotics are also used to wipe out bad flora and prepare the way for good flora. Some people do well on antibiotics, but long-term administration to wipe out Borrelia (Lyme disease), for instance, is controversial. Where did Dr.De Meirleir stand on long term antibiotic use?
Drawing a line between broad-spectrum antibiotics that tend to wipe out all manner of gut flora, Dr. De Meirlier agreed that broad-spectrum antibiotics could be harmful, but the careful but long-term application of narrowly focused antibiotics targeted at a specific pathogen can be very helpful. He did not mention which kinds of antibiotics were useful in ME/CFS, but we know that Xifaxin (rifaximin) is one gut-affecting antibiotic that is sometimes helpful. We’ll be hearing more on antibiotics and the gut from Ken Lassesen.
Check out the Treatment Video for more that we didn’t go over. Then it was onto the next video in the series:
Remedy and Hope
Biomarkers
“[New technology] will ultimately be able to identify a number of things we previously weren’t able to identify”–Dr. DeMeirleir
A biomarker would be a huge advance, and we keep hearing hints researchers are getting closer. We’ve been getting those hints for years, but they do seem to be a bit stronger now with Dr. Klimas, Dr. Marshall-Gradisnuk and now Dr. De Meirleir feeling at least cautiously optimistic that this long biomarker search might just be about to bear fruit. Let’s not leave Dr. Natelson and his suite of potential nervous system biomarkers out of the picture.
Dr. De Meirleir expects that a number of biomarkers will be detected in 2013 and 2014, which could mean that as researchers dig deeper they’re coming up with new candidates, or (depending on the translation) work to validate biomarkers will be published (or both).
Dr. De Meirleir on ‘Hope and Remedy’ for ME/CFS
Technology is king, and Dr. De Meirleir’s reference to efforts involving deep tissue sampling and deep sequencing suggested he believes new and novel findings are on the horizon. One suspects Dr. De Meirleir was referring to the multiple levels of research being done by the Chronic Fatigue Initiative, the Open Medicine Institute, the CFIDS Association of America and the WPI.
Who knows what lurks in the depths of our cells and our genome? At the Invest in ME meeting Mady Hornig made reference to a ‘novel’ candidate the CFI team may have found in Dr. Peterson’s spinal fluid samples, which were the last samples added to the CFI’s big pathogen investigation. The Simmaron Foundation went to great lengths to get Dr. Petersons spinal fluid sample in there, and it looks like their efforts may be paying off. That might come as no surprise to Dr. Peterson, who’s been hitting paydirt in the cerebral spinal fluid samples of his more cognitively and neurologically challenged patients for years.
The ME/CFS field may be small and terribly underfunded, but some portions of it do have access to top technology. The Whittemore Peterson Institute recently reported the finding of an endogenous retrovirus in the guts of ME/CFS patients, and it recently broke the wraps on its own big ‘deep sequencer’ this summer.
The research for biomarkers, Dr. De Meirleir said, is in FULL PROGRESS.
Dr. De Meirleir’s Favorite Recent Discoveries
The first fruits of deep sequencing research, Dr. De Meirleir said, are finding high rates of chronic infection in ME/CFS. (Those findings have not been published yet. If they do hold up they will certainly redefine a disorder some researchers think is permeated with infections (and others think isn’t). As an example, a spinal fluid study looking for pathogens last year found none, and the first pass of the CDC Blood Safety Research study found none as well.
Dr. De Meirleir appears to have some inside knowledge of what who is finding, and those early findings suggest the pro-pathogen plus crowd may just be right. If he’s right about the timing, we’ll know sooner rather than later.
“I think this (the infection study) will soon be published” Dr. DeMeirleir
The hope is probably that these deeper and more rigorous examinations of our cells and genome will be able to come to more definitive conclusions than less sophisticated efforts of the past.
Check out the video for more on Lyme Disease, the crappy behavioral studies Dr. De Meirleir believes are muddying the waters, and others.
The ME Association is on to something with these very nicely produced, easy to follow video interviews and the word is they’ve lined up more physician/researchers for upcoming series.
Thanks for the post, there are two gaps, I wondered if they were meant to have videos?
Yes, I see video’s; sometimes they take a moment to appear. Have they appeared yet?
No video’s here yet..
How about now…They’re showing up for me on Google Chrome and Internet Explorer..
“The U.S. Air Force completed a study in 1984 at a cost of $4.5 million dollars.
They exposed rats to pulsed 2450 MHz frequencies, which is Wi-Fi, at levels well below federal guidelines, for 21.5 h daily for 25 months.
The results show that rats exposed to microwave radiation had more B-cells and Tcells. These cells are part of the immune system and become activated when the body detects unhealthy bacteria.
The t-cells alert the b-cells that, in turn, produce antibodies to attack the bacteria. What is unusual, is that this experiment was conducted under sterile conditions.
That is one reason it cost so much money.”
http://www.youtube.com/watch?v=6v75sKAUFdc
Thanks, Cort. This gives me so much hope. I am a newbie: got sick in 2009 and diagnosed in 2010. I am 55 and so I have no time to lose.
I can see the video’s on the computer with Safari, Chrome and IE. But not on the iPad. Settings within the channel are correct. The links you placed below the video’s do work fine on the iPad, so people can watch them.
Sorry for the inconvenience!
Nice one Cort – KDM with all his years and dedication a sage in our ME trying to understand and treat (he does so well try).
Thanks 🙂 More to come from Dr. DeMeirlier including this gastrointestinal video 🙂
I believe I’m the only CFS Patient in the US that has had over a YEAR of WEEKLY RITUXIMAB Treatments! It was for other CFS ‘dysregulated’ issue of which I almost died – in 2008, so they tried it as last resort. After a year, Rituximab’s ancillary effect of somewhat mitigating my 51-70 point drop in IQ via onset of CFS in mid 1991 was amazing! However, don’t know how long it will remain, am still kinda a bit more cogent cognitively from this, these days. However, the necessarily massive STEROIDS – both IV & oral required to survive the Rituxin caused major havoc with my immune function! The Steroids also caused Rosacia. Rituximab is extremely dangerous and VERY expensive (~$5,800 – $7,900 per Treatment just for the drugs, and it takes several hours to for the Treatment (to infuse, and also for phlebotomy & IV drip that I also required)!
Wow… what a story. Thanks for sharing your experience.
You’re most welcome Marco… What needs to be analyzed is what Treatments I’d had prior that cold have helped boost the effectiveness of Rituximab, so the hoped for results can be duplicated in other PWC. For instance, I’d had a year of Anti-Virals, plus 18 months of Anti-Biotic Treatments (I’d had E-Coli). So perhaps those Treatments helped me to avoid ‘relapse’. I’m not cured by any means, but my quality of life has improved from where I’d been ‘in the sub-basement’ of being bedridden for the majority of the time! sigh…
For the record – I’d undertaken ** 49 ** Rituximab Treatments = many more than any other ME/CFS Patient I’ve heard about. I believe if they’re more deliberate about ‘sub-typing’ ME/CFS Patients for future Rituximab Studies, it may be fruitful. Also, over the decade since my Treatment, I’ve striven to restore my immune function – as I refused IVIG (I know our blood supply is tainted). My wonderful PCP supported my decision, as long as it was going in the right direction!
Hi Suellen
WHat is the theory about ME/CFS then here? Is it something to do with the B cells or something. How is your health now?
As someone who had CFS for 15 years until it suddenly cleared up, I can tell you I tried Abx for the chronic infection theory but it didn’t work. At least I don’t think it did. IMO cfs isn’t a chronic infection or virus as it would show up in your immune system tests. People DO have chronic viral infections but then that’s what they have, it’s not CFS then. CFS by definition is ruling out chronic viral and bacterial infections first. CFS is also not a throid problem. It’s not Lyme. You don’t need Ampligen. CFS patients esp in America are taken for a ride with all these expensive treatments which don’t work. I also got taken for a ride. WHatever CFS is noone knows and I don’t think they ever will.