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20 Years Ago Series VI: ME/CFS in 2017 – Researchers Look into their Crystal Ball

Posted by Cort Johnson

Where will we be in five years? ME/CFS professionals look into their crystal balls and give their iinformed guesses.

For the last article in the “20 Years Ago Today” Series celebrating the 20th anniversary of International Awareness Day, we asked ME/CFS researchers and professionals to have some fun and take a look in their crystal ball and hazard a guess as to where CFS will be on a variety of topics in five years.

We asked them 10 questions….told them comments were welcome and, if they had anything else to add, to let it rip…..

THE 10 QUESTIONS

 

  • Will there be a new definition?
  • Will we have a validated biomarker?
  • Will ME/CFS be broken up into different subsets?
  • Will the FDA have approved a drug for CFS?
  • Will we know why more women than men have chronic fatigue syndrome?
  • Will Fibromyalgia and ME/CFS be more closely associated with each or more distinct? 
  • Will federal funding levels have increased more than 100%?
  • Will a subset of CFS patients be taking auto-immune drugs? 
  • Will a novel pathogen have been discovered that causes ME/CFS?
  • Will herpesviruses be recognized as a substantial contributor to CFS?

Eight ME/CFS professionals answered: Dr. Chia,  Dr. Klimas, Dr.  Alan Light,  Dr. Rowe,   Dr.Ken Friedman,Dr. Pocinki,  Annette Whittemore, and one person who wished to remain anonymous.

Dr. Nancy Klimas of Nova Southeastern Univ

Dr. John Chia of Evermed

Dr. Alan Light at the Reno IACFS/ME Conference

Dr. Peter Rowe of John's Hopkins

 

 

 

 

 

Dr. Ken Friedman

Annette Whittemore

Dr. Alan Pocinki

 

 

 

 

 

 

 

 

 

 

 

 

WILL THERE BE A NEW DEFINITION?

 

  • Yes – Dr. Klimas, Dr. Light, Annette Whittemore, Dr. Pocinki, anonymous
  • No – Dr. Rowe, Dr. Friedman, Dr Chia

The Winner was Yes! Most respondents felt there would be a new definition within the next five years.

Comments – A biological finding or biomarker could lead to a new definition or there could be a merging of old definitions. Annette Whittemore felt biological findings would be a key, as she stated There will be biological evidence that will determine the new definition:  example; an inflammatory/autoimmune disease, etc. “

Some of the ‘no’s’ have had enough of the definition question already. Dr. Friedman felt we 3 or 4 available was already too much stating “There is enough confusion about the definitions that we already have. ” Dr. Chia felt enough time and money had been spent on the definitions, and would rather see money spent elsewhere, stating ” I hope not. We spent enough time doing definition in the past 27 years. We need to focus on etiology and effective  treatment. ” 

WILL WE HAVE A VALIDATED BIOMARKER?

Not just a biomarker but a validated biomarker….A validated biomarker would legitimize ME/CFS and hopefully point a dagger at the heart of the disorder…at least for some.

  • Yes – Dr. Klimas, Dr. Light, anonymous
  • No – Dr. Rowe, Dr. Friedman, Dr. Pocinki. Dr. Chia

The Winner was….No! Although the voting was close more ME/CFS professionals felt we were not likely to have a biomarker in the next five years.

Comments – Dr. Light and Annette Whittemore felt we were being too cautious with our focus on one biomarker…both felt more than one will be found in the next five years

Dr. Friedman felt five years simply wasn’t enough time to validate one….”There may be proposed, new biomarkers but it will take more than 5 years to accumulate enough data from various sources and places for the scientific community to accept any biomarker as being valid.

Dr. Chias experience with patients as both a physician and a researcher lead him to believe the patient population was simply too heterogeneous for a biomarker to be found quickly but he did know where to look – at viruses stating “I do not think so, the patients are too heterogeneous. We need to focus on the viral infection.”

SUBSETS! WILL ME/CFS BE BROKEN UP INTO DIFFERENT SUBSETS? 

  • Yes – Dr. Klimas, Dr. Light, Dr. Friedman, Annette Whittemore, anonymous
  • No – Dr. Pocinki

The Winner is Yes! – The respondents were quite optimistic that we are going to see verifiable subsets soon.

Comments – Dr. Light continued to be quite optimistic (suggesting that his work is proceeding well? ), stating he felt “at least 2, if not 3 or 4″ would be identified…and Dr. Klimas felt that “we already have identifiable subsets but that they’ll be more ‘biologically based in the next few years”.

Dr. Pocinki was the odd man out but asserted that he (and others) were already breaking ME/CFS into subsets in their practices stating “It already is by some of us..” but “officially, no” .

WILL THE FDA APPROVE A DRUG FOR ME/CFS IN FIVE YEARS?

  • Yes – Dr. Light, Annette Whittemore
  • No – Dr. Chia, Dr. Pocinki, anonymous

The Winner is No! – more respondents felt FDA approval for a drug would not happen in the next five years.

Comments – – Dr. Klimas gave us a ‘maybe’ in 4-6 years. Dr. Chia did not think so as he does not believe Ampligen is a very effective drug.  Dr. Light felt a drug would be approved that would work on a subgroup of people with ME/CFS.

WILL WE KNOW WHY MORE WOMEN THAN MEN HAVE CFS? 

  • Yes -Dr. Klimas, Dr. Light, Annette Whittemore, Dr. Chia, Dr. Pocinki, anonymous
  • No –Dr. Rowe

The Winner is Yes! Many of the respondents felt they already knew why women are more effected than men.

Comments – Dr. Klimas said “l ready do , women have always been more prone to immune mediated illness.  It’s in the genes,  and testosterone is involved.” Dr. Light qualified his answer a bit and said, in most but not all subgroups we’ll understand why women are more likely to have CFS. Annette Whittemore felt that “just like MS and lupus, female hormones that regulate key immune processes will most likely play a role in the pathogenesis of disease.

Dr. Chia reported that that increased susceptibility to viruses during ovulation each month played a role;  “Women are more susceptible 2 of the 4 weeks each month, because starting with ovulation, the immune response is shifted to Th2 direction. The immune response will not shift into Th1 direction when the patient gets sick with a virus, and this aberrant immune response will likely predispose to persistent infection.”

Dr. Pocinki stated he believes women are susceptible because the underlying hypermobility/dysautonomia phenotype is more common in women, though I did just see two men in the past week”.

WILL FIBROMYALGIA AND ME/CFS BE MORE CLOSELY ASSOCIATED WITH EACH OTHER OR MORE DISTINCT IN FIVE YEARS?  

  • More closely associated – Dr. Rowe, Annette Whittemore
  • More distinct – Dr. Klimas, Dr. Chia. Dr. Pocinki, anonymous

The Winner was More Distinct – As researchers learn more about these disorders most respondents felt the two disorders will become more distinct.

Comments – Dr. Light felt FM would be a major subset of ME/CFS. Dr. Friedman felt ‘neither’ was the best answer stating There is no ongoing research attempting to correlate the incidence of FM with CFS and, therefore, in 5 years, the relationship of the two illnesses to each other will not change.”

To my knowledge this, unfortunately, is true, despite the NIH stating on their website for many years that they believe FM and CFS are intertwined and that they support research involving both disorders, comparative studies are very rare.

Dr. Pocinki also felt that inadequate federal funding would thwart progress here even though the two disorders are more closely related than we know. He stated “They will remain distinct, unless people recognize the underlying pathophysiology that they share, which is unlikely as federal funding unlikely to increase.”

Dr. Chia felt the disorders were two ends of the immune spectrum; ME/CFS patients have an under-activated immune response and FM the opposite….They are “two ends of the spectrum, one is virus dominating and minimal immune response (CFS) and the other dominated by the immune response and much less virus in muscle and other tissues (fibromyalgia).

WILL FEDERAL FUNDING LEVELS HAVE INCREASED MORE THAN 100% IN FIVE YEARS?

  • Yes – Annette Whittemore (most likely)
  • No – Dr. Rowe, Dr. Light, Dr. Pocinki, anonymous

The Winner was No! There was a strong consensus that, given the economic times, research funding will not increase significantly in five years..(A question regarding a 50% increase met with the same response).

Comments – Dr. Klimas said she ‘hopes so’ and stated that’s still not ‘very much money‘. Dr. Light felt that unless the economy improves it would not happen. Annette Whittemore felt the potential was there for the budget to increase by ten’s of millions of dollars by 2020. Dr. Chia said he ‘did not know’.

WILL A SUBSET OF CFS PATIENTS BE TAKING AUTO-IMMUNE DRUGS? 

  • Yes – Dr. Klimas, Dr. Rowe, Dr. Light, Dr. Friedman, Dr. Pocinki, Annette Whittemore, anonymous (some)
  • No  

The Winner Was “Yes” – This was the only question with a unanimous response. Dr. Pocinki, however,  felt the percentage of patients taking these drugs will be small. 

Comments – Dr. Friedman noted that some people with CFS already are taking these drugs. 

Dr. Pocinki answered yes, but he qualified that by stating he doesn’t think it will (or should be) a large percentage of patients…”yes, a subset will be taking autoimmune drugs, but it will be quite a small subset–unless lots of people for whom it is not appropriate decide they want it anyway.

Dr. Chia noted the need for federal funding for more studies stating…“If the trial on rituxan is done on enough patients and insurance company covers the drug ($5000/dose), this may become a reality. This type of drug will likely help the inflammatory symptoms much more than fatigue, which is measure of the tissue viral load, in my simple clinical opinion.

WILL HERPESVIRUSES BE RECOGNIZED AS A SUBSTANTIAL CONTRIBUTOR TO ME/CFS?

  • Yes – Dr. Klimas, Dr. Light (for one subset), Dr. Friedman, Annette Whittemore, anonymous
  • No – Dr. Chia, Dr. Pocinki

The Winner was…..Yes! – The consensus was research will emerge over the next five years indicating that herpesvirus reactivation plays an important role in this disorder. 

Comments – Dr. Chia – “It has been two decades since the work was done on EBV and CMV. If one scrutinize the initial symptoms of the flu-like illness, EBV and CMV are clearly not the causes in the majority of ME/CFS patients .HHV6 may be a contributor but effective antiviral drug did not help the CFS symptoms except mild improvement of cognitive function. Co-infection or reactivation of old herpesviruses are likely common but the contribution to the disease is probably low. Remember the AIDS epidemic? Many of the gay males evaluated in 1979 and early 1980’s have markedly elevated EBV and CMV antibody. Few investigator thought that these herpesviruses actually caused the decline of the T cells. In 1984, HIV was found in one culture by two laboratories within one month, and we just celebrated/remembered 30 years of efforts and success. What happened to EBV and CMV?  Herpesviruses are not significant pathogens until when the T4 cells are almost totally depleted. We should think of ME/CFS the same way. 

WILL A NOVEL PATHOGEN BE DISCOVERED THAT CAUSES ME/CFS?  

  • Yes – Annette Whittemore
  • No – Dr. Rowe, Dr. Light, Dr. Friedman, Dr. Chia, Dr. Pocinki, anonymous

The  Winner Was No! – The strong consensus was that the search for novel pathogens is probably in vain.

Comments – Dr. Klimas felt ‘maybe’ a novel pathogen could be discovered but that re-activated viruses and other pathogens will be better understood. Dr. Light too felt it was more likely that ‘a known pathogen that we have overlooked’ will play a bigger role. Dr. Friedman stated “The illness is not caused by one unique pathogen.  That is a simplistic notion that should be retired.” Annette Whittemore felt that ‘perhaps many‘ pathogen may be discovered.

Dr. Chia stated “We need to accept and focus on what is staring at us all this time. Enteroviruses are the major causes of this chronic illness, according to my study. Someone else will need to do same studies to confirm chronic enterovirus infection, so one viral etiology will be accepted to move the field forward. XMRV was dismissed after numerous investigators could not reproduce the finding. Drug companies will not start to make new drugs until there is an agreement in the field.

FURTHER COMMENTS

Dr. Klimas – suggested that we watch the genomics and deep gene sequencing work for the next major push forward. (Several laboratories are using deep sequencing techniques to look for pathogens in ME/CFS)

Annette WhittemoreI think that most of the advances in this disease will happen over the next five years due to the availability of more sophistocated scientific technologies.  There has already been a large increase in public awareness of the severity of disease and with increasing awareness comes the pressure to do something about those who are suffering.   As knowledge increases surrounding the similarities of ME to other well known but serious chronic diseases the federal commitment to research will increase.   Private commitments have already increased significantly in the last year, by those who have become re-energized by the potential for real progress. ”   

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