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Interesting blog post regarding Norwegian ME/CFS developments. (Mella&Fluge research)

user9876

Senior Member
Messages
4,556
The immune system is certainly involved in perpetuating this illness. But we do not understand the trigger for developing this disease yet.
Why is the immune system dysfunctional?

Understanding the trigger may not be important. Understanding what is happening in the immune system once triggered will be the key. Something like Rituximab breaks up one cycle repsonsible for some auto immune disease. I think its something to do with the b-cells sending signals that the t-cells respond to. Given not all RA (or ME) patients respond to Rituximab then I assume there are other autoimmune processes.

I'm not sure if they know about triggers in autoimmune diseases in general. I have a vague memory of reading an article about whether RA occurs in clusters - I think they looked at a few hospitals for referals and found no particular clusters.

Its quite possible that there are many different triggers with the trigger being a bug that puts the immune system in a particular state.
 

Jacque

Senior Member
Messages
424
Location
USA - California
I will have to do some checkin on Australia... Dr. Kogelnik did tell me that when I got the tick bite it may have also infected me with the viruses that cause ME/CFS....hmmmmmm? Interesting huh? Have you seen Under Our Skin yet? It is a real eye opener!
 

Jacque

Senior Member
Messages
424
Location
USA - California
Do they have mosquitos in Australia?? Do you know? Cuz Mosquitos carry it as well in addition to viruses and parasites... Maybe someday they will find that it is not the Lyme carried by the bugs makin us all so sick - but a particular virus or parasite. I do think bug's makes the most sense as to how millions are getting this and it is not spread person to person.. hmmmm:thumbdown:
 

Jacque

Senior Member
Messages
424
Location
USA - California
But there are some places in the world eg Australia in which lyme disease hasnt been officially even found yet eg Australia, so it would be very hard to believe that all the Australian ME/CFS people have lyme. For that reason it has to be something different then actual lyme disease.

Maybe thou another tick borne disease similar to lyme could be implicated thou. (I had a flea plague in my house and also do have ticks in the place I used to camp, I found one crawling up my shirt one time).
Oh and I have also heard it can be spread by fleas! Scarey stuff huh?
 

Jacque

Senior Member
Messages
424
Location
USA - California
it has a greater risk of serious infections, probably a greater risk of overall infections, too.

I have a friend who went on the Enbrel for her RA (I thought she was crazy when I heard it bein such a scarey drug) but she is doing SO much better... I am gonna talk with Dr. Kogelnik about it on the 9th...
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,089
Location
australia (brisbane)
Do they have mosquitos in Australia?? Do you know? Cuz Mosquitos carry it as well in addition to viruses and parasites... Maybe someday they will find that it is not the Lyme carried by the bugs makin us all so sick - but a particular virus or parasite. I do think bug's makes the most sense as to how millions are getting this and it is not spread person to person.. hmmmm:thumbdown:

Do we have mossies as we call them here, they can be the size of a small horse and attack u by the millions the buggers. Maybe not the size of a small horse but we have a crap load full here, im sure there are many different infections carried by mossies and ticks that they dont even know about. Health authorities here deny the existance of lyme disease here saying the cases found here in australia got infected from overseas but a news storie last year showed people infected with lyme that hadnt even left the country.

Theres a famous tv commercial here that said 'Dont forget the aeroguard and have a good weekend', aeroguard is an iconic mossie repellant that we aussies have used for decades to try and stop getting bitten.

cheers!!!
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
Do they have mosquitos in Australia?? Do you know? Cuz Mosquitos carry it as well in addition to viruses and parasites... Maybe someday they will find that it is not the Lyme carried by the bugs makin us all so sick - but a particular virus or parasite. I do think bug's makes the most sense as to how millions are getting this and it is not spread person to person.. hmmmm:thumbdown:

yeah we do have mosquitos. We have our own mosquito disease in Aussie tropics called Ross River Virus. 10% of those who catch Ross River Virus end up with ME/CFS.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
I lived on a creek feeding into the Ross River from age 4 to age 17. My aunt, who lived nearby, caught Ross River Fever. I was never diagnosed with it, but I have also never been tested for it. I am also not aware of its life cycle. Does it resember the other pathogens that appear to trigger ME? I don't know. Bye, Alex
 

Jacque

Senior Member
Messages
424
Location
USA - California
Good Grief we have Ross River Virus, West Nile Virus, Malaria, Lyme, and many others....heck look at what caused the Bubonic Plague!!! Insects are LETHAL little dirty needles..... I encourage you all to watch Under Our Skin because it will help you to understand why the Govts are turning a BLIND eye to the illness... there is no$$$ in it...it is disgusting when you learn about it! My pain today was terrifying honeslty...and I sat there in it just thinking "one bug bite"...that is all it took to do this to me....:cry:
 

redo

Senior Member
Messages
874
My suspicion...and that is all it is... is LYME DISEASE!!! I had a tick crawl in my ear around age 12 and have been ill since about that time in my life. Coincidence? Lyme is spread by any blood sucking insect (not just ticks) and you don't have to get the rash. I am wondering if all of these autoimmune illnesses are Lyme? Lyme is stealthy... I am gonna post a thread on Lyme... If you have not watched Under Our Skin on Netflix...do it soon and then you will see what I am talking about!
I think lyme plays a role in some ME cases, but it seems more likely to me that the role is being just another trigger, like mentioned here (you're welcome to that debate further in that thread).
yeah we do have mosquitos. We have our own mosquito disease in Aussie tropics called Ross River Virus. 10% of those who catch Ross River Virus end up with ME/CFS.
If you've got a source for that, then please do share. The longer the list of possible (and proved) triggers, the better understanding we'll have of the disease. IMO we've got to look for what's being triggered, and that "what" seems to be something which is able to cause autoimmunity. Given what we currently know, I think the "what" is most likely a endogenous retrovirus, or a retrovirus which is widespread and dormant in many healthy people.
 

Jacque

Senior Member
Messages
424
Location
USA - California
I think lyme plays a role in some ME cases, but it seems more likely to me that the role is being just another trigger, like mentioned here (you're welcome to that debate further in that thread).

If you've got a source for that, then please do share. The longer the list of possible (and proved) triggers, the better understanding we'll have of the disease. IMO we've got to look for what's being triggered, and that "what" seems to be something which is able to cause autoimmunity. Given what we currently know, I think the "what" is most likely a endogenous retrovirus, or a retrovirus which is widespread and dormant in many healthy people.

If you have not watched UNDER OUR SKIN on Netflix that would be a great place to start for info on the link between CFS/ME and Lyme! Another GREAT website is www.canlyme.com ... lots of good info there...

We have all been labeled as being a little NUTTY and Psychosomatic in regard to our illness... and all I know is trying to unravel this mess is MAKING ME NUTTY!!
 

Jacque

Senior Member
Messages
424
Location
USA - California
Understanding the trigger may not be important. Understanding what is happening in the immune system once triggered will be the key. Something like Rituximab breaks up one cycle repsonsible for some auto immune disease. I think its something to do with the b-cells sending signals that the t-cells respond to. Given not all RA (or ME) patients respond to Rituximab then I assume there are other autoimmune processes.

I'm not sure if they know about triggers in autoimmune diseases in general. I have a vague memory of reading an article about whether RA occurs in clusters - I think they looked at a few hospitals for referals and found no particular clusters.

Its quite possible that there are many different triggers with the trigger being a bug that puts the immune system in a particular state.

From what I have read about Lyme it is a very intelligent bacteria. Knows how to run, hide, change form etc... even has its own way of building bio films to guard it from the immune system as does the Protomyxoia parasite. I wonder if all of this "trickery" and stealth like activity is what causes the immune system to run amuck... For instance Hashimotos (autoimmune Thyroiditis) the immune system is trying so hard to kill the pathogen infecting the thyroid that damages the thyroid in the process. Lyme lodges itself in joints, in nerves, brain etc and the same occurs.. Sometimes I wonder if we stand a chance with such a smart invader.... guess time will tell.
 

Jacque

Senior Member
Messages
424
Location
USA - California
Norwegian Science trials Etanercept as treatment for chronic fatigue syndrome (CFS/ME

Norwegian Science trials Etanercept as treatment for chronic fatigue syndrome (CFS/ME)

A short introduction of the studyprotocol to the Dept. of Oncology, Haukeland University Hospital, Bergen, Norway by Olav Mella and ystein Fluge named: English Tumor necrosis factor-alpha inhibitor etanercept as treatment for chronic fatigue syndrome/ myalgic encephalopathy (CFS/ME), including for patients with no response to treatment with the anti-CD20 antibody Rituximab

The open single trial is ongoing and ends in 2014 after the last patient 24 moths follow-up. This study has to be viewed as a pilot study. Data from this study can form the basis for future studies and treatment aimed at confirming possible findings. The study protocol is released and supervised by Norwegian National Committee for Ethics in Medical Research (REK). EudraCT number: 2011-006069-16.

The pathophysiology of CFS is not clear and highly debated. Studies aimed at identifying biomarkers for CFS patients may greatly benefit the identification of patients. Furthermore, insights into the pathophysiology of disease may facilitate novel therapies. This trial is aimed for patients that did not respond (non-responders) to the Rituximab treatment.

Maximim duration of treatment of a subject according to the protocol:

etanercept 50 mg injections subcutaneously (SC) once every week, for a maximum of 52 weeks.

Participations: 15 patients who fulfill Fakuda- criteria recruited from the Rituximab-trial.

Main objective of the trial:
Patients self-recording of CFS/ME symptom improvement and quality of life issues during 12 months follow-up. The primary endpoint is selfreported major symptom improvement lasting at least for six consecutive weeks, independent of time after intervention during followup.

Single such periods of major improvement, and the sum of these during 12 months follow-up, are recorded.
-Self-reported symptom improvement at 3, 6, 9, 12 months follow-up after start of intervention.
-Duration of maximal continous major response during follow-up.
-Toxicity during follow-up.

Inclusion criteria:
-CFS/ME according to Fukuda criteria, moderate and serious.
-Age 18-66 years

Exclutions criteria:
-Fatigue not fulfilling criteria for CFS/ME.
-Pregnancy or lactation.
-Previous malignancy (except basal cell carcinoma or cervical dysplasia)
-Previous long-term immunosuppressive treatment (ciclosporin,
mycophenolate mofetil, azathioprine)
-demyelination disease
-cardiac failure
-endogenous depression
-lack of ability to adhere to protocol
-known multi-allergy with risk from etanercept injection
-reduced liver function or kidney function
-HIV infection or viral hepatitis. Latent tuberculosis.

Etanercept (Embrel) is classified as an immunosuppressant drug. A relatively new drug (1988), etanercept blocks the effects of an immune agent called tumor necrosis factor -alpha (TNF-a) by binding to it and stopping it from interacting with bodys cells. TNF-a is an important cytokine the body uses to amplify the inflammatory response produced during infection. It has been called the master regulator of the immune response. TNF-a produces many of the symptoms associated with infection including fever and pain.

KTS_4_2011_Clinical trial: Link: http://totoneimbehl.wordpress.com/2...udie/kts_4_2011_clinical-trial-soknad-utland/

Note: This is a new trial to see if Embrel can be an alternative for non-responders. There is some info om this drug in this forum so take a serach.

--------------
The second that was mention here were a annual repport from the Univeristy Hospital in Bergen Haukeland that descrebed the reserch om patogenesis og ME called project 911557 where there are hunting for biomarkers. And hopefully they will find the auto-antibody "needle in a haystack"

In the Fluge et. al (2011) PLosONE study there draw bloodsampels and contiued after in the fallow-up study that still is ongoing.

I will assume Fluge or Mella will talk about the biobank and this prosject in Invest in ME conferance i May and the way foreward in next Rituximab-trials.

;)

The biobank is starting to look impressing and they do collaborate with A Kogelnick, Klimas and so on - This is gooood stuff folks :D
They need to hurrrrry up... I ain't no spring chicken!! :) But at least they are movin forward!!:thumbsup:
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
If you've got a source for that, then please do share. The longer the list of possible (and proved) triggers, the better understanding we'll have of the disease. IMO we've got to look for what's being triggered, and that "what" seems to be something which is able to cause autoimmunity. Given what we currently know, I think the "what" is most likely a endogenous retrovirus, or a retrovirus which is widespread and dormant in many healthy people.

I was quoting roughly out of my head with facts from study(s) years ago to come up with a 10% rate (there may of been another study too as I have seen 10% mentioned).. I just looked to try to a reference for you.
http://www.racgp.org.au/afp/200908/200908barber.pdf 250 patients with Ross River Virus, EBV or Q fever were followed for 12 mths. The incidence of CFS was 12% at 6 mths and 9% at 12mths and this did not differ between these three infective agents. Page 588 of the Australian Family Physician Journal (which also then goes on to reference a study)

I dont know but maybe the patients who end up with CFS after lyme may be of a similar percent. It would be fair enough to think lyme may be doing the same thing as these other illnesses.

Whatever the issue is.. it dont appear to be these infective agents but that they are just acting as a CFS trigger... something else is wrong
 

redo

Senior Member
Messages
874
Thanks. Yes, it's actually approximately the same figures with neuroborreliosis (I'd assume it's much the same with standard borreliosis but I haven't seen the numbers on that).

In this study they find out that 10% of those infected and treated, are unable to work or study and have pretty much ME/CFS symptoms, despite not being any proof of the initial infection. http://www.ncbi.nlm.nih.gov/pubmed/22690926