Lipkin bad news folks

natasa778

Senior Member
Messages
1,774
Likes
2,450
Most ME/CFS specialist docs say live virus vaccines are contraindicated for PWME.

I believe vaccines are an important and valuable resource. I get all the killed virus vaccines, such as the annual flu vaccine, because I believe it to be preferable to getting the full-blown illness. Live virus vaccines are an entirely different matter. Generally, people with immune impairment -- and that includes many PWME -- are advised not to get live virus vaccines because the odds of getting the illness from the vaccine is greater than the odds of encountering the virus "in the wild".
Then there is another potential issue, that of vaccine adjuvants, which are put in there in order to provoke the immune system ... And no one really has a clue who/if this is a good idea in chronic diseases like ME where the immune system is already skewed up.

Here is just one example

Unveiling the Secret of Vaccine Adjuvants

Recent immunological breakthroughs have uncovered that the innate immune system has a much higher degree of complexity than previously thought and can be activated along a wide range of different pathways, depending on the engagement of different innate immune receptors. This in turn determines the type of immune response that will be generated against the vaccine antigens or pathogens.

When vaccines are produced and tested that is not done with sick populations in mind, but healthy, immunocompetent people are used. I don't think anyone has really tested new vaccines on large groups of people who have aberrant immune function.
 

free at last

Senior Member
Messages
697
Likes
239
Its a very compelling issue for me. after aquiring through years of illness ( both CFS/ME and catching viruses that i had a hard time with) a extreme phobia to catching fever producing viruses. Especially influenza. Its destroyed my life, where my health improved.But my mind has just shut down, i refuse to go out at all in winter months, shops, buses, chrismas with relatives you name it i wont go.

So i have been having the flu jab for the last few years with what i thought was a good tolerance, however after this most recent one i am not so sure.

The last two or three years i seem to be getting what i can only describe is a bone condition of some kind. A aching and stinging sensation on the tops of both feet, sharp pains down the side of my feet, that come and go, Knee pain, pain in my shoulders, joints ect, have seemed to get worse then improve somewhat in cycles. It feels like auto immunity to me, or what i imagine auto immunity to be like.

I have been tested for Arthritis but it came back negative ? But heres the interesting thing 10 days after this recent flu jab( it takes 10 days for anti bodies to delevelop bear in mind ) 10 days after the jab, i noticed weakness in my legs. then bone pain started bad, in my feet, legs, knees, shoulders, and sides of my torso.

A feeling of heavyness and weakness in my legs like walking through water, or wearing led boots. All the pains i was getiing befor the jab, but now much worse ?

I thought i was getting gullian barre syndrome. I was scared out of my wits. The weakness and bone pain lasted quite bad for about 3 or 4 days, but is now improving a lot, as has the weakness in my legs.

I am convinced because it started on day ten, its to do with the production of anti bodies. If that is so, what has been causing the milder bone pain previouse to this ?

As it felt exactly the same, but to a less sever degree. I am strongly suspecting anti bodies.

Which would mean auto immunity. I will now have to see how long this bone pain lasts, my legs and feet have improved a lot, but my shoulders are still quite bad, hard to remove a tee shirt for example.

Another thing i noticed when these bone pains started, was clicking in my bones, my knees mostly, but arms too. Everytime i got up CLICK, it was ridiculouse, and was clearly related to the the start of the 10 day symptoms.

As the symptoms have improved, you guessed it, so has the clicking.

Now what do i do ? next year i will be basket case knowing i have no extra protection, because i think it might be dangerouse for me to continue with these yearly vaccines. If i get flu now, i am at the mercy of its full force. I really am starting to belive the norwegians are onto something. I dont belive It was the cause of the ME as that has improved dramatically over the years. But these other symptoms i belive are related to autoimmunity. Its interesting that GBS often starts with a infection. As might other autoimmunity conditions. Which the ME could seem to be a catalyst. As mine started with classic flu like attacks with high temperatures. I am hoping this all might make sense to others on here. And what they think of what i am saying. Its certainly related to this disccussuion. Very timely so for me.
 

redo

Senior Member
Messages
869
Likes
153
http://trialx.com/curetalk/2011/11/...equencing-and-proteomics-to-hunt-cfs-viruses/

Dr. Ian Lipkin, Hunting Down Viruses using Deep Sequencing, as Seen in the NYTimes.
In the end, cutting edge technology may be the game-changer in chronic fatigue syndrome – a condition that strikes an estimated 1-4 million patients in the United States.
Viral involvement and immune system abnormalities have long been suspected as contributing or causing the disease. But for many reasons, including the multiple definitions used, delays in diagnosis and small sample size, study results have been mixed.
Now however, researchers have powerful state-of-the art tools at their disposal, and the Center for Infection and Immunity at Columbia University stands at the nexus.
“We have the best tools to do the work and the funding required to pursue it,” said center director Dr. Ian Lipkin, “and will bring the very best possible minds to the problem irrespective of institution. We will be taking a broad, open-minded approach to the problem.”
The CII, and other institutions, using venture philanthropist seed money provided by the Glenn Hutchins Foundation, will focus their efforts on three components:
  • Identification of disease markers.
  • Disease mechanisms.
  • Finding the specific bacteria, fungi and or viruses – alone or in combination – responsible for causing or exacerbating the disease.
The research will be two-pronged and coordinated by Dr. Mady Hornig, an associate professor of epidemiology at the Mailman School of Public Health and director of Translational Research at the CII.

Multiple deep sequencing platforms will be used for pathogen discovery.
“One of the challenges in a chronic disorder like ME/CFS is that we may be dealing with a situation where the trigger, which we have good reason to believe is an infectious trigger, may precede the onset of symptoms or recognition of the chronicity of the pattern by quite a long period,” said Dr. Hornig. “The agent could have a hit and run; its levels reduce over time, or induce a biologic situation even in the absence of continued high levels of infectious agent.”
Unlike microarray chips that have a finite number of known pathogens for testing, deep sequencing allows researchers to find not only an unlimited number of varying strains of known pathogens, but novel pathogens as well. Testing will most likely be done at a sequencing center pooling the resources of several large centers as the equipment is very expensive and personnel have to be specially trained, according to Dr. Hornig.
Researchers will be looking for patterns that are consistent across geographic areas, time and clinical status, said Dr. Lipkin.
“We show quite clearly a wide range of infectious agents can trigger similar pathways in immune system that result in similar outcomes so it may well be that there are many pathogens who have capacity to cause chronic fatigue syndrome by either inducing autoimmunity or some sort of impact on the immune function which results in activation,” said Lipkin, who plans to examine other hypotheses as well depending on the results of initial tests.
Defining biomarkers through the use of proteomics will also be carried out at the Yale Keck Biotechnology Resource Laboratory as well as at Columbia University.
In terms of disease in general, biomarkers, that is proteins that carry out body functions, have been analyzed for diagnostic purposes for more than a century. Recent advances in protein analysis have expanded the opportunities. Proteomics, which is the study of proteins in a specific time frame, is currently the best bet for creating new approaches to diagnosing and treating human disease, and designing new drugs to treat disease.
“The effort in ME/CFS is to try to find some biomarkers that will be likely to identify a set of pathways that are likely to involved. That will be an enormous gain for the field and of course the patient,” said Dr. Hornig. Biomarkers in ME/CFS can be used to create diagnostic laboratory tests as well as to determine therapy response and prognosis.
The key to maximizing the outcomes of these tests is the criteria of the patients selected, according to Dr. Lipkin. He said this will give the greatest possibility of finding objective measures for monitoring and measuring the disease. University of Miami researcher and physician Dr. Nancy Klimas, who has been involved in several clinical definitions of ME/CFS, is in charge of the cohort recruitment to draw 200 patients from five sites located throughout the U.S.
“What we want to do is start with patients who have been characterized extensively using standardized criteria established by a group of widely respected clinical researchers,” said Dr. Lipkin.
Both Dr. Lipkin, who is a board certified neurologist, and Dr. Hornig, who is a board certified psychiatrist, stress that while they believe ME/CFS is a neuropsychiatric disorder because of the problems with concentration, memory and autonomic nervous system involvement, they do not consider it psychosomatic.
“It’s very difficult in my mind to make this a psychological disorder,” said Dr. Hornig,“We do patients a disservice if we focus solely on secondary phenomena of being disabled or being unable to carry on life to your capacity – that shouldn’t ever be viewed as being the primary problem.”
Does anyone know how far they've come in the deep sequencing study, or have some sort of notion about when we could expect it to be done?
 

natasa778

Senior Member
Messages
1,774
Likes
2,450
Now what do i do ? next year i will be basket case knowing i have no extra protection, because i think it might be dangerouse for me to continue with these yearly vaccines. If i get flu now, i am at the mercy of its full force. I really am starting to belive the norwegians are onto something. I dont belive It was the cause of the ME as that has improved dramatically over the years. But these other symptoms i belive are related to autoimmunity. Its interesting that GBS often starts with a infection. As might other autoimmunity conditions. Which the ME could seem to be a catalyst. As mine started with classic flu like attacks with high temperatures. I am hoping this all might make sense to others on here. And what they think of what i am saying. Its certainly related to this disccussuion. Very timely so for me.
Not sure if the flu vaccine you've been getting in recent years has this new oil-based adjuvant. That one is much more likely to provoke autoimmune response than previous ones:

http://www.medconnect.com.sg/tabid/...vant-Boosts-Flu-Vaccine-Response/Default.aspx

Oil-based adjuvants have been used for years in animal vaccines and are known to induce serious autoimmune conditions ...
 

wastwater

Senior Member
Messages
1,125
Likes
783
Location
uk
Think I may of had a reaction after measles vaccine ,leading to sensori neural deafness and a degree of brain damage think its called ADEM.It supports my idea that ME is some kind of bad reaction to virus I then had EBV and seem to have gone progressive but with no muscle or joint stuff.But that's the timings of MS
 

free at last

Senior Member
Messages
697
Likes
239
Not sure if the flu vaccine you've been getting in recent years has this new oil-based adjuvant. That one is much more likely to provoke autoimmune response than previous ones:

http://www.medconnect.com.sg/tabid/...vant-Boosts-Flu-Vaccine-Response/Default.aspx

Oil-based adjuvants have been used for years in animal vaccines and are known to induce serious autoimmune conditions ...
Hi Natasha thanks for the information,I also have quite bad psoriasis,and am wondering if Psoriatic arthritis is linked to this, though in that case antibodie testing is not done because as far as i am aware it doesnt show up. Not sure what that means, if they are suggesting in that condition that anti bodies are not the cause. Which doesnt seem to fit in with the flu jab type reaction, ive mentioned. But i know little about Psoriatic arthritis, and or if antibodies are involved in that or not ? The fact that these bone problems flared quite badly after the vaccine, ( 10 day period after jab) certainly seems to suggest to me a antibodie autoimmune response ?
 

free at last

Senior Member
Messages
697
Likes
239
Think I may of had a reaction after measles vaccine ,leading to sensori neural deafness and a degree of brain damage think its called ADEM.It supports my idea that ME is some kind of bad reaction to virus I then had EBV and seem to have gone progressive but with no muscle or joint stuff.But that's the timings of MS
sorry to hear that, i know the problems you meantion can result in the symptoms from measles itself. I think the vaccine you mention might be a live virus vaccine, and with the symptoms you mention it kind of sounds like you developed measels symptoms ? But i am no expert its just a observation from what you have said
 

wastwater

Senior Member
Messages
1,125
Likes
783
Location
uk
There is something called SSPE that's a persistent measles virus in the brain but I think that kills quicker.Measels may alter permability of the gut or perhaps there is an unknown even slower version of the virus.I think it might be to do with herv-k18 though a bad reaction to virus,supose that would make it an unknown genetic process
 

wastwater

Senior Member
Messages
1,125
Likes
783
Location
uk
Just wondering as you mention bone pain have you had youre thyroid checked and vitamin D levels
 

natasa778

Senior Member
Messages
1,774
Likes
2,450
The fact that these bone problems flared quite badly after the vaccine, ( 10 day period after jab) certainly seems to suggest to me a antibodie autoimmune response ?
Yes that is what I meant, that oil-based adjuvants in vaccines would make autoimmune reaction even more likely.
 

free at last

Senior Member
Messages
697
Likes
239
Just wondering as you mention bone pain have you had youre thyroid checked and vitamin D levels
Hi again not sure to be honest, but its difficult getting numerouse testing done, Doctors often dismiss symptoms of bone pain. But i have had tests for different things, thyroid would likely be tested i would have thought ? Vit D i havent thought about, but not sure how that fits in with the 10 day vaccine antibbodie effect that i have had happen recently.

Because vaccines was being discussed i thought some might find my observations of likely antibodie autoimmune effects happening to me, starting exactly on the time scale the vaccine would prompt a antibodie response to the influenza strains in the vaccine. But seeming to go much further than that.

But i suppose that might depend on the fact that the bone pain was auto immune in nature.

All i can say is, i have had these bone pains before the vaccine. ( so it wasnt just vaccine related as my doctor recently suggested to me ) The vaccine made those already pre existing sypmtoms far worse, exactly when the antibodie production would likely have started with the vaccine ( coincedence unlikely in my opinion ) and the fact that i have had chronic psoriasis most of my life ( which can lead to Psoriatic arthritis ) which as far as i am aware is also auto immune in nature.

And the fact i was diagnosed with ME/CFS many years ago that i managed to partly ( and i mean partly ) recover from.

With all this talk about vaccines, and the recent interest in autoimmunity. I would have thought that would have been of interest to the discussions going on at present on the forum.

As it seems to be showing these effects in a real life situation. Rather than just the science behind it all, that is always going for obviouse reasons.

More Proof if you will, to add to the already developing Strong indications of autoimmunity on ME/CFS patients. And the pitfalls in deciding if vaccines should be given to patients. I really would rather not die a horrible death due to a bad cytokin storm ( or otherwise ) from a flu virus. Hence deciding for me, up till now, the vaccine was the less of the two horrible evils

Even if they have seemed well tolerated in the past. Which in my case they have been up till now. But now i am seriously considering stopping all vaccines.

It seems like i am playing with fire here. The next vaccine could do far worse than the recent effects. Which i feel like i have got away with to a certain degree. ( meaning i am not crippled by it this time ) Just left with a worsening of a already pre existing bone auto immune dysfuntion of somekind, be it Psoriatic arthritis or something else.

Cheers for your intrerest to those who have replied. I hope i am helping in someway, others understand all these issues of vaccines, there effect on ME/CFS patients,and the recent interest in auto immunity with paitents, ect.
 

free at last

Senior Member
Messages
697
Likes
239
Hi natasha it seems to me a double edge sword. The effect of the upsurge of the anti bodies themselves ( in any vaccine, with or without aduvants ) And the effect of the adjuvants too.
 

free at last

Senior Member
Messages
697
Likes
239
There is something called SSPE that's a persistent measles virus in the brain but I think that kills quicker.Measels may alter permability of the gut or perhaps there is an unknown even slower version of the virus.I think it might be to do with herv-k18 though a bad reaction to virus,supose that would make it an unknown genetic process
Measels is a particulaly nasty virus to get, Though to be honest i know very little about its long term effects. Any virus that lies dormant in the body ( i am thinking also chicken pox ) has to be bad news for any immune compromised patients. Interestingly when my grand daughter had the MMR vaccine a few weeks later i came down with what my doctor suspected was mumps? Being a live vaccine i tried to find out if i could have aquired this from my grand daughters vaccination. The general feeling was it was extremly unlikely. But what about immune compromised people ? because theres no way i caught mumps anywhere else. at the time i was in my winter staying in, and not going out anywhere period. My exposure to people was very very limited.

And those that i was around my immediate family did not have any symptoms of mumps ? strange indeed. Beware of live vaccines. from children, exposure to patients. Despite that the health authoriety might say. theres no exposure risk. Try telling me that when my kneck swelled up. and i couldnt move my head a inch. it was awful.
 

natasa778

Senior Member
Messages
1,774
Likes
2,450
Any virus that lies dormant in the body ( i am thinking also chicken pox ) has to be bad news for any immune compromised patients. Interestingly when my grand daughter had the MMR vaccine a few weeks later i came down with what my doctor suspected was mumps? Being a live vaccine i tried to find out if i could have aquired this from my grand daughters vaccination.
I've heard many reports from people coming down with disease when kids in household get vaccinated. Flu mist is one of the latest ones that seems to be causing the same problem.
 

wastwater

Senior Member
Messages
1,125
Likes
783
Location
uk
I now think the measles vaccine might of only been a trigger and it may of been roseola virus that caused my febrile fit.Its more commonly called hhv-6.Im starting to wonder if I may of had mycoplasma on board too.(might be vaccine contaminant)
 

currer

Senior Member
Messages
1,409
Likes
861
Hi free at last,

Fluge and Mella found a higher than normal rate of psoriasis in the families of their ME study patients

Could this be a predisposition to develop autoimmune disease that runs in families or could it be some kind of HERV that is reactivating?
 

free at last

Senior Member
Messages
697
Likes
239
Hi Currer that is interesting, i didnt know that, All those psychiatrists that think the immune system isnt heavily involved in the development of ME/CFS. Clearly are barking mad. Its so obviouse for many patients that this is true.

Its not just a case of a infection starting a mental disorder. the infection itself produces sustained immunological changes. Over many years. that can manifest in a number of ways.

Even leading to mental illness for example. But the Psychatrists, are not very good at answering the age old paradox. what came first chicken or the egg ?

Well if the egg is the infection, and mental trauma the chicken. the egg nearly always comes first. I am surprised they dont realize this more readily, because in other illnessnes. ( ones that are easier to prove through testing ) Surely they can see similar trauma in patients that mimic ME/CFS patients. Are they really that blinkered ? Or is it a case of something else ? i suggest something else. But a waste of time. thinking too much about it agreed from our point of view. Apologies for going off track. I am just thinking aloud. Havent had a psych rant for a while you see
 

free at last

Senior Member
Messages
697
Likes
239
I've heard many reports from people coming down with disease when kids in household get vaccinated. Flu mist is one of the latest ones that seems to be causing the same problem.
I certainly belive it Natasha. Patients should be very wary of any live vaccine and contact with anyone who has had this type of vaccine. I found that out the hard way.
 

biophile

Places I'd rather be.
Messages
8,976
Likes
16,577
I do not blame vaccination, but I did notice a coincidence that onset of CFS symptoms began several months after MMR booster in highschool, and around the same time someone close to me came down with suspected EBV.

I forgot about it until recently when I was sorting through old papers and found a record. Judging from the date, IIRC attempts at regular exercise seemed to fail after that point, due to post-exertional symptoms and failure to adapt (which has only gotten worse since then). Then an onset of multiple physical and cognitive symptoms, although not severe enough to cause many sick days. Several months later, calcification of fatigue, sore lymph glands, nasal congestion, joint pain, muscle burning upon movement, sleep disturbance and daytime sleepiness, light sensitivity, reduced orthostatic tolerance, restlessness, increased difficulties with concentration etc.

Was told nothing was wrong, although I was embarrassed and lacked the ability to properly articulate everything at the time. I occasionally pushed exercise again and attempted a normal life for years, ended up with a permanent decline of function, in part due to treatment mistakes including CAM and GET. As far as I am concerned, GET should be placed in the same league as poorly-evidenced CAM.