Astounding Norwegian research breakthrough with Rituximab can solve CFS mystery!!!

[kurt]

Hi, I am very sceptical of any placebo response in an illness that has a variable course and is frequently misdiagnosed. One or two positive placebo responses does not make it the placebo response.

I've been thinking about that, and just realized there are ME/CFS patients who respond to saline infusions! Seriously, Dr Bell has treated patients with saline IVs alone, in hopes of raising blood volume. Sometimes just a few infusions can reset something in a patient and they feel better for quite awhile. So for an ME/CFS patient study, control patients should probably not be given saline IVs, as they could be unintentionally providing a known treatment for a subgroup of patients.

 

[Kati]

I don't think that getting us some health care in Canada will hapen if we do not speak up. Hep C patients had to scream. MS patients I believe went to human rights in order to have CCSVI in Canada. funny enough our friend Leona health minister gae them 5 millions to research CCSVI. As for us,we get nothing for saying nothing.

The opportunity we have here with Rituximab, is to force rheumatology to serve us patients with MECFS. since it looks like it may be an auto-immune component, the best specialist is a rheumy. and there are rheumy in just about every community in Canada.

Some sort of legislation could help.
Writing letters and demanding answers back would help.
Sending the PLoS One paper to key people in Canada would help. (provincial and federal health minister, human rights commission, rheumatologist associations,

Complaining in here will not achieve us anything.
Canadian wide campaign anyone?

You can't get basic tests such as natural killer cells. It now takes 5 years to see a specialist in Ottawa.

The head surgeon offered back surgery because he didn't identify fibromyalgia.
The pulmonary specialists stared into space because she didn't undestand inflamed lungs but she said other people had desribed the same symptoms. I guess it doesn't make sense to her when the tests come back perfect.
The gastroenterologists prescribed nexium for a lifetime because he thought the esophageal reflux is from too much acid instead of too little whic is the problem with people with cfs. The doctor in Ottawa emergency said he had never heard of anyone have too little acid.
The doctor laughed after we described a migratory pain of fibromyalgia that moved from lower back to the neck once and told me behind my family member's back that it is not possible.
The hospital emergency said to my family member she was not responding to the painkiller because she had decided she would not.
Everybody else that is sick can get ivs at home if need be but if you have cfs and need it due to low blood volume and malabsorbtion you can not. They will charge you $500 for one visit and give you the run around for weeks and months over one thing or another so that it does not happen.
The above are all true. This is why we need centers of excellence because almost every doctor does not understand cfs/me.
Meanwhile our dear Prime Minister is off buying more planes and ships so that we have the latest.
I say yah to Norway. They have struck me as being people with good values and common sense.

 

[RustyJ]

I've been thinking about that, and just realized there are ME/CFS patients who respond to saline infusions! Seriously, Dr Bell has treated patients with saline IVs alone, in hopes of raising blood volume. Sometimes just a few infusions can reset something in a patient and they feel better for quite awhile. So for an ME/CFS patient study, control patients should probably not be given saline IVs, as they could be unintentionally providing a known treatment for a subgroup of patients.

Salt also has antimicrobial properties.

 

[max]

yes Kati. Canadian campaign is in order. I just wrote the Prime Minister's offie and sent a copy of the apology from norwegian gov't and am now writing to the premier of the province. Also, i encourage to write comments on the articles at the cbc web site when the subject matter is relevant to cfs/me to raise awareness and bring this neglect into the light instead of hidden on these forums. Getting this illness imposes responsibilities on us to do something. I see it as a purpose of our lives.

Hi Boomer - when my partner became ill 15 years ago, we were both working, she as an art teacher, me in Air Traffic Control R&D - she of course lost her job, I lost my job a couple of years later due to not being able to care for her and maintain any commitment to my career - she of course was my priority. For the first time in years, whether based in reality or not, I am ever so slightly, optomistic. Perhaps I have 'incorrect treatment beliefs'.

Our Rheumatologist said, "change your job"

Our Infectious disease specialist advised seeing a psychiatrist.

Our neurologist (within minutes of entering the room) said, ...."ah,....you're a perfectionist" - this because my partner had drawn a diagram describing where her headaches were situated. The neurologist also found infection in her CSF - nothing significant.

Our oncologist (blood analysis following years of abnormal WBC) said "forget about it and get on with your life" and regarding the liver funtion findings - go see a liver specialist.

These people are paid large salaries and apparently only listen to authority - they have no interest in the care or well being of their patients. That is my understanding on their attitude - I base this opinion on observation.


You are absolutely correct in your observation concerning voices being "hidden on these forums" and not supported by mainstream media - this is something they will find difficult to defend when their role is analysed and discussed.

Personally, regardless of the outcome of the Norway study findings and any subsequent success that may or may not follow, I will not stop.

Still waiting for the UK media to make any comment - why?


GO Norway

 

[Tristen]

I've been thinking about that, and just realized there are ME/CFS patients who respond to saline infusions! Seriously, Dr Bell has treated patients with saline IVs alone, in hopes of raising blood volume. Sometimes just a few infusions can reset something in a patient and they feel better for quite awhile. So for an ME/CFS patient study, control patients should probably not be given saline IVs, as they could be unintentionally providing a known treatment for a subgroup of patients.

2 liters of Normal Saline gives me ~ 50% improvement in symptoms, but it only lasts for ~ 36 hours. Definitely a variable that needs consideration for "double blind" studies.

 

[Sing]

KFG,

I think that is a very intelligent post. I copied out the information on Disautonomia in Autoimmune Illnesses. We are making progress here in assembling relevant data. I am so fed up with getting very little help. I only hope that the tide is finally turning. We all need to keep up the fight by presenting information and requesting more help, whether calmly or colorfully. We can gather information here and support each other but then we have to get out there and use it. That's our challenge!

 

[Andrew]

I have a question. I see where the doctors say this is (or could be) an autoimmune problem, but they offer no basis for saying this. Granted, this is a strong indication of an immune problem, but I don't see any test results for autoimmune.

 

[redo]

2 liters of Normal Saline gives me ~ 50% improvement in symptoms, but it only lasts for ~ 36 hours. Definitely a variable that needs consideration for "double blind" studies.

Fascinating. If I could speculate, might it be because the body only have around 5 liters of blood (blood containing waaay to high levels of cytokines and other immune parameters), and when you "water it down", you feel better for a while...? Just some thoughts (not facts . It would fit with the hypothesis that our symptoms are mostly autoimmune in origin (without stating anything about what/which infection is causing the auto immunity).

 

[redo]

I have a question. I see where the doctors say this is (or could be) an autoimmune problem, but they offer no basis for saying this. Granted, this is a strong indication of an immune problem, but I don't see any test results for autoimmune.

Mella and Fluge are looking for such parameters, suspecting it's a autoantibody we're talking about (they're testing over 50 cytokines/chemokines, autoantibodes, other parameters). I am not sure about it being a autoantibody, but I am pretty sure that parts of the immune system is causing the symptoms. They don't have any definite answer to what it is, they are looking hoping to find it, although it's uncertain still...

 

[mrpanoff]

I wonder if Rituximab may be harmful in patients with high persistent herpesviral load.

I, for one, have 500000 copies of HHV-7 DNA per 1000000 cells in saliva (0 in blood), which an autoimmune condition alone can hardly account for.

 

[kurt]

Yes, I've been wondering about that herpes angle as well, particularly as the paper mentions both EBV and CMV as candidates for B cell infections that might be driving the overall pathology. That would be pretty ironic, if CFS turns out to be an auto-immune version of Mono, given the early theories that Mono caused CFS (and the evidence in the CAA study also of post-EBV patients who contract CFS). Maybe in ordinary Mono the B cells stay protected, and if the EBV or CMV gets into the B cells, that is what creates CFS? Will be interesting to see how rapidly we get some answers now. Incidentally, EBV creates functional problems with B12...

OK, I have to share this, just about burst out laughing (ironic laughter, not really funny) when I read this on the CDC website about EBV:

Chronic EBV Infection
Reliable laboratory evidence for continued active EBV infection is very seldom found in patients who have been ill for more than 4 months. When the illness lasts more than 6 months, it should be investigated to see if other causes of chronic illness or CFS are present.
see: http://www.cdc.gov/ncidod/diseases/ebv.htm

So, if this does turn out to be EBV driving a B Cell problem, and the illness has lasted for more than 6 months, then they will say we have CFS?

 

[leela]

Norway Issues Apology to ME Patients!

http://www.euro-me.org/news-Q42011-003.htm

"I think that we have not cared for people with ME to a great enough extent. I think it is correct to say that we have not established proper health care services for these people, and I regret that."

 

[mellster]

I think there is a high chance further research will eventually prove the chronic EBV link (with or without ever developing full blown mono) for a vast majority of cases - although other pathogens can probably trigger CFS/ME as well - and discover common B12 deficiencies/methylation problems. Thus treat the EBV (and/or any other discovered suspect pathogens) if necessary, modulate the immune system and supplement aggressively.

Yes, I've been wondering about that herpes angle as well, particularly as the paper mentions both EBV and CMV as candidates for B cell infections that might be driving the overall pathology. That would be pretty ironic, if CFS turns out to be an auto-immune version of Mono, given the early theories that Mono caused CFS (and the evidence in the CAA study also of post-EBV patients who contract CFS). Maybe in ordinary Mono the B cells stay protected, and if the EBV or CMV gets into the B cells, that is what creates CFS? Will be interesting to see how rapidly we get some answers now. Incidentally, EBV creates functional problems with B12...

OK, I have to share this, just about burst out laughing (ironic laughter, not really funny) when I read this on the CDC website about EBV:



So, if this does turn out to be EBV driving a B Cell problem, and the illness has lasted for more than 6 months, then they will say we have CFS?

 

[Sing]

http://www.euro-me.org/news-Q42011-003.htm

"I think that we have not cared for people with ME to a great enough extent. I think it is correct to say that we have not established proper health care services for these people, and I regret that."

The article states:

"Such a public apology from a governmental health agency has never occurred before."

I think we've got traction in Norway!

 

[kurt]

I think there is a high chance further research will eventually prove the chronic EBV link (with or without ever developing full blown mono) for a vast majority of cases - although other pathogens can probably trigger CFS/ME as well - and discover common B12 deficiencies/methylation problems. Thus treat the EBV (and/or any other discovered suspect pathogens) if necessary, modulate the immune system and supplement aggressively.

Very possibly they will find more and more EBV links. Here's one study from 2008 exploring how NK cells are responsible for keeping EBV from transforming the B Cells during the acute EBV phase...

Tonsilar NK Cells Restrict B Cell Transformation by the Epstein-Barr Virus via IFN-?
Till Strowig1,2, Fabienne Brilot1,2, Frida Arrey1,2, Gwenola Bougras1,2, Dolca Thomas3,4, William A. Muller5, Christian Mnz1,2*

Author Summary Top
Epstein-Barr virus (EBV) establishes a persistent infection in nearly all human adults. Due to its tumor causing potential EBV infection has to be continuously controlled by the immune system in virus carriers. We demonstrate here that in the first week after infection, when other EBV-specific immune responses are still being recruited, human natural killer (NK) cells are able to prevent transformation of the main host cell type by EBV, the human B cell. Especially NK cells of tonsils, the primary site of EBV infection, inhibit B cell transformation by EBV after they have been activated by dendritic cells (DCs). For this protective function, EBV can directly stimulate DCs to efficiently activate NK cells. Interestingly, NK cells primarily prevent B cell transformation by EBV via secretion of the anti-viral cytokine IFN-?, and NK cells from tonsils and lymph nodes produce 5-fold more of this cytokine than their peripheral blood counterparts. These data suggest that specialized NK cells in tonsils, the mucosal entry site of EBV, can be efficiently stimulated by EBV-activated DCs, and then limit EBV-induced B cell transformation until EBV-specific immune control by other components of the immune system is established.
see: http://www.plospathogens.org/article/info:doi/10.1371/journal.ppat.0040027

Interesting that the NK plays this role given our problems with NK cytotoxicity and sometimes low levels. Also, there is a connection with the tonsils. I wonder how many ME/CFS patients have had problems with tonsils, perhaps as children? (I did, eventually had them out as they were constantly infected)

 

[Andrew]

Mella and Fluge are looking for such parameters, suspecting it's a autoantibody we're talking about (they're testing over 50 cytokines/chemokines, autoantibodes, other parameters). I am not sure about it being a autoantibody, but I am pretty sure that parts of the immune system is causing the symptoms. They don't have any definite answer to what it is, they are looking hoping to find it, although it's uncertain still...

So they are continuing the research? That would be fantastic. Also, fantastic that they did the first study. Many cancer docs would not have bothered.

 

[mellster]

Kurt, very interesting link indeed, thx. Since I started taking LDN (and also other supplements known as modulators/microbial inhibitors) I had some temporary lymph node swelling (close to tonsil area) and tenderness and the ENT doc reviewing the ultrasound noted large tonsils (though no issues with it). This was also the phase were energy returned and CFS symptoms started leveling off. The swelling and slightly sore throat leveled off eventually as well, some temporarily recurring tenderness has remained.

Very possibly they will find more and more EBV links. Here's one study from 2008 exploring how NK cells are responsible for keeping EBV from transforming the B Cells during the acute EBV phase...



Interesting that the NK plays this role given our problems with NK cytotoxicity and sometimes low levels. Also, there is a connection with the tonsils. I wonder how many ME/CFS patients have had problems with tonsils, perhaps as children? (I did, eventually had them out as they were constantly infected)

 

[justinreilly]

I'm Skeptical, This all started because they had a patient who had Hodgkins lymphoma and also had a diagnosis of CFS. Which as a side note just goes to show what a Wastebasket diagnosis CFS is. Applying a CFS diagnosis to Hodgkin's Lymphoma which has severer fatigue as a component is absurd. It completely defeats the purported purpose of even creating CFS to begin with. But I digress.

It just seems funny that the whole JM & WPI XMRV issue involved a retrovirus that is purported to have an association with a type of cancer. So we now have these doctors who give someone with Lymphoma who also has the Diagnosis of CFS Rituximab.

Now if ME which is what many with the CFS diagnosis have is caused by a retrovirus that can cause or play a role in the development of cancer or various cancers. Then it seems that giving this drug could and would act as a mask (if you will) and as a result you run the risk of not looking for cancers which could have deadly results for the patient.

But we'll easily know if this is part of the establishment agenda towards ME/CFS. If The usually suspects begin to attack those Doctors their assertions and this potential treatment then we'll have our answer.

Not necessarily. There have been reports of higher than normal incidence of lymphoma in ME/CFS patients. Dr Peterson noticed that with his Incline Village patients. If someone had had ME/CFS for a long while and then developed lymphoma, that wouldn't cancel out the ME/CFS diagnosis. And if the cancer treatment also cleared up the ME/CFS, that would be certainly be intriguing and worth examining.

I definitely agree, ixchelkali.

 

[justinreilly]

Hi, all.

Having now read the full paper, I note that it was reported that two of the patients who received Rituximab, and one who received the placebo (saline solution) were still going strong a year later and were back at full-time work (and by then their B cells had come back up). So how do I explain that? Well, I'm guessing that shutting down the inflammation and the concomitant oxidative stress in the patients who received Rituximab must have given glutathione such a big boost that it was able to break the vicious circle and restore the methylation cycle and the immune system to normal operation by the time the B cells came back up. In the past, I don't know of anyone who was able to turn things around by boosting glutathione, but maybe the inflammation prevented it from going high enough. How about the one who recovered after receiving only saline? I don't know. That's pretty amazing. It's well-known that many PWMEs/PWCs have what has been called a "mild" case of diabetes insipidus (not to be confused with diabetes mellitus), and that involves low blood volume. Putting in some saline has helped a lot of patients temporarily. I don't know how it could produce a permanent fix. So that's a puzzle.

I sure wish these researchers had monitored glutathione in these patients! Note that they write, "Thus, we believe that B-cell depletion targets a central player in the pathogenesis of the CFS disease, directly or indirectly." I suggest that this central player is glutathione.

Best regards,

Rich

The recovered placebo patient did not have CCC ME, so that's enuf explanation for me.

 

[justinreilly]

All good news, this! Can only be good in stimulating research and squishing the psychosocial model even if it's early days for deciding if Rituximab is a good way to go for treatment (in terms of likelihood of response, side effects, stability of effect, etc.). In particular, I expect it to be a stimulus for forcing researchers to stick to the CCC or similar because it would be ridiculous to submit people with idiopathic fatigue to drugs like this one.

Huge step forward.

Good point! (especially since it was shown that a control (w Fukuda "CFS") who responded to the drug did NOT have CCC ME!)