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

May 20, 2012

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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24 comments

{ 22 comments… read them below or add one }

taniaaust1 May 21, 2012 at 4:21 pm

[quote] 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. [/quote]

I think its sad that half of our experts cant see that happening.

Thanks for this very interesting article Cort. Great concept to interview our specialists on those questions. :)

ps.. would you mind in future when putting photos up of various experts in the field on an article, to put the peoples names under their individual photos. (I was left wishing I knew who was who).

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DaiWelsh May 22, 2012 at 6:04 am

@taniaaust1: If you click on the images it takes you to a page about them. HTH

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Cort May 22, 2012 at 6:56 am

Thanks Tania…I hope to expand this in the future – get a bit more buy-in from the experts….Actually I’ll just put captions under the names—easy-peasy as they say down under :)

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usedtobeperkytina May 21, 2012 at 10:10 pm

Cort, loved the idea of this. A tip, including anonymous was not helpful and was distracting. When giving opinions, no one should be anonymous. Now, giving inside information as anonymous source, that’s another matter.

However, what you did here was quite revealing. I really liked the variety you got. I was struck at how much disagreement there still is on the disease. Dr. Chia believes he has found the cause. But there is also disagreement on how to do studies, that is new definition or not.

Not surprising that patients can’t agree if the medical professionals who have worked on this disease for decades can’t agree on some of the basics.

I was surprised anyone thought a new drug would be found in five years. It takes much longer to go through the process. Unless we get something repurposed, such as Rituximab, don’t look for a new drug soon.

I was also surprised at the negative comments on the herpes virus theory. What would Dr. Ron Glaser say?

I feel so bad for these researchers. Reminds me of the 2011 SoK. I was also shocked at how much disagreement there was. Natelson said the disease does not include immune system reaction of cytokines. I thought, “What?” I thought that was a given. I remember Dr. Klimas called him out on that. I mean, aren’t there some things we know that all of us in the know know? Aren’t there some known knowns? I know there are some known unknowns and some unknown unknowns. But I thought we had at least some known knowns.

I am dreaming of an island where all of our experts and scientists are given $100 million and 1,000 patients and 1,000 matched controls. We are there for a year and the scientists put us on exercise bikes, prod us, poke us and give us all kinds of chemicals / nutrients to see what works. They have weekly meetings hashing out their disagreements. Ian Lipkin and the Norwegians are there too.

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Cort May 22, 2012 at 5:22 am

Sounds like a great desert island…yes, this short look at five years does reveal considerable differences in opinions exist. I think a major problem is that, as you note, lack of research funding allows all sorts of theories to flourish and keeps researchers from nailing down what is actually happening…Everybody is taking their kind of blindfolded poke at the ‘elephant’, so to speak – and maybe most of them have a piece of it…..I’m really looking forward to what the CASA project does for standardized research and an organized approach to this disorder.

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Anne Ö May 22, 2012 at 6:16 am

Love the idea of the desert island! I also often think of the ‘blindfolded poke at the elephant’ metaphor, and I’m thinking there may be not just different parts of the elephant, but different elephants (subgroups).

We’ll have to keep fighting for more research funding so that things can start to get clearer.

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CBS May 22, 2012 at 6:25 am

A heterogeneous group of patients with lots of subsets but everyone agrees that immune regulating meds are likely on the horizon fora subset of us but little agreement on specific underlying pathogens. Hmmmm….

Having had the opportunity to meet/received treatment from some of these docs and having had the privilege of a close look at the practices of a couple other prominent specialists, it is clear that some of the differences in opinion derive directly from the uniquely self-selecting patient populations that each sees. Lot’s of enterovirus like symptoms, you go see Dr. Chia and you’ll likely benefit (and keep seeing him); herpes virus issues, see Montoya and you’ll likely have a great experience and return for more. The same goes for Klimas (immunology), Rowe (POTS), etc. And in my experience, you might not need to treat all of the bugs with which your body is dealing. Rather, if you get enough of them under control (or conversely, if too many get out of control), you can tip the balance so that your remaining immune defenses can start to get an upper hand (or spiral out of control). I find it interesting that the one area of consensus was that in the near future immune modulating meds would play an important role.

Some of these respondents aren’t clinicians and so their patient exposure is even more restricted. And lastly, while she has a great access to a diverse range of resources, Annette doesn’t have formal medical training. I’d be interested in seeing how this breaks down by clinicians versus bench scientists along with some comment on the various specialties that each brings to the table.

Lastly, definitions might be a frustrating topic for many but separating out subsets (through response to meds or with validated biomarkers) is good for everyone, even those who are not included in the identified subsets. As you remove homogenous subsets from a heterogeneous whole, not only do the subsets look more homogenous, so do those who are not part of the identified groups (making diagnosis of their particular issue(s) less complicated).

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Cort May 22, 2012 at 7:00 am

Thanks for the illuminating response CBS…I was struck by the different populations these physicians are probably seeing as well. Dr. Pocinki’s subset includes Ehlors-Danlos Syndrome but I wonder how many others would include that group….During a visit to Dr. Peterson he thinks some physicians are seeing very different patients.

The CDC is looking at this question now in their study employing a variety of ME/CFS specialists…they are comparing and contrasting the types of patients they see, how they’re diagnosed and treated. It should be fascinating…

I love the idea of one doctor getting the bugs under control by aiding one system or systems while other doctors might directly go after them…

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usedtobeperkytina May 22, 2012 at 9:09 am

I hope we don’t get caught into thinking subgroups mean different diseases. For example, breast cancer has subgroups and treatments accordingly. But they are all breast cancer.

Lung cancer has multiple different causes, but it is all lung cancer.

Hepatitis has multiple different types, but they are all hepatitis.

I would love to see NeuroEndocrineImmune Disease or Multiple System Dysfunction Disease and then a type 1, type 2, etc.

Tina

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CBS May 22, 2012 at 9:32 am

I wouldn’t want to see the research get “caught” into thinking subgroups were or were not different diseases. This is something that ought to be driven by science and research. I think that everyone should be taken seriously and treated with respect.

Cancer, MS and RA can all cause fatigue and pain but it wouldn’t further our understanding to call them the same disease. The disease process in some ME patients might be closely related (MS and RA) and some may be similar in symptoms and secondary disease processes (MS and some cancers).

Tina,

I have idea how this will play out but I do want to see a better understanding of the disease mechanisms in all of us. I’m curious, why the desire to have everyone in one group (what if that may not represent the actual underlying mechanism or etiology?)? Or do you feel strongly that the underlying etiology is the same/similar across all ME/CFS patients?

Respectfully,

Shane.

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oceanblue May 24, 2012 at 12:52 am

What a great idea for an article, thanks Cort.

@Tina.
Love your Dream Island idea. My fantasy island would be almost the same but with more new blood; I think more scientists of the caliber of Ian Lipkin on the case would help lead to faster progress.

@CBS
Wise point about self-selecting patients. I also think that as researchers are only human their take on CFS is also coloured by their own particular research speciality.

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oceanblue May 24, 2012 at 1:22 am

Thought I’d polish my own inexpert crystal ball:

Will their be a validatd biomarker?
No, but I’d love to be wrong on this. No one has come remotely close to a replicated biomarker yet, and that’s not surprising as robust biomarkers are rare things in medicine. Take Rheumatoid Arthritis: this is a known autoimmune disease with some knowledge of it’s mechanism (TNF-alpha plays an important role and anti-TNF-alpha is a therapy), yet there is still no robust biomarker for the disease.

Will there be a new case definition?
I’d like to rephrase this as ‘will there be a VALIDATED case defnition?’ and my optimistic answer is yes – maybe even two of them. We already have 6 consensus case defintions in use (Fukuda & it’s 2003 update, Oxford Criteria, Empiric Criteria, CCC and ICC) – what we need now is one backed up by robust evidence so that all researchers will buy into it. The CDC’s plan to collect lots of data from respected clinicians (Peterson, Klimas etc) and then use that to evaluate/modify existing case definitions could lead to the breakthrough.

Validating a case definition without knowing the cause of the illness is hard to do, but Kendell had produced a really interesting paper on this, based on the methodology originally used for classifying bacteria before gene sequencing came along.
http://dx.doi.org/10.1176/appi.ajp.160.1.4

The basic idea is that homogenous cases will cluster together so that, for example, if you took a whole bunch of Chronic fatigue and CFS/ME patients and profiled them every which way you might find that there was a distinct cluster of patients who happened to meet the ICC or similar – with the rest of the patients scattered all over the place. The patients that cluster together have a common illness. Maybe I should blog on this – anyone interested in hearing more?

Will there be sub-groups?
Based on the above, there may be distinct illnesses eg ME, CFS and Chronic Fatigue – or the sub-groups might fall in a way that surprises us all.

You’ll be pleased to know my crystal ball has misted up and I have no idea about the other questions.

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caledonia May 25, 2012 at 9:16 am

“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).””

This doesn’t make any sense if you have both.

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MishMash May 25, 2012 at 11:18 pm

Very interesting article Cort. Everybody indeed has their theory. Mine: It is mostly auto-immune. Part of the rheumatoid illness bulge of the last 30 years. I’m old enough to remember when everybody in the class knew the only guy/girl with serious hay fever or asthma. Now its unusual to find kids without these. When did peanuts become a potentially lethal interaction for so many kids? And the experts who are saying autism is increasing are correct (it’s not a definition thing). Writ large, our immune systems are becoming more sensitive. Just throw ME/CFS on that pile:
- Did your parents (either or both) have depression + joint hypermobility?
- Do you have any siblings or parents who had chronic depression, bipolar disorder?
- Did both one parent have chronic depression, and the other chronic rheumatoid condition?
- Was your mother or grandmother (or -father) the youngest in a very large family? Can you trace several “youngest, of the youngest, of the youngest” in your geneaology. As in your mother’s mother was the youngest of eight kids. The younger ones seem to get the shallow end of the gene pool.

Hopefully the doctor all-stars group won’t get side tracked again looking for a pathogen. There isn’t one. We have met the enemy and it’s our own immune systems.

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Charles May 30, 2012 at 12:26 am

I would be interested to hear the views of the doctors involved in the blood flow/orthostatic intolerance aspects of this illness.

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Cort May 30, 2012 at 6:36 am

Dr. Pocinki is very focused on that aspect of ME/CFS and I’ll be talking with him about that in the next couple of months. Several studies are also due out this year, I believe, that are focusing on blood flows – its an area with a good bit of research going on…

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Kunia50 June 3, 2012 at 11:14 am

Joint hypermobility = genetically weaker connective tissue strength, density = bulging veins, pooling blood, POTS, gut permeability, compromised mucosal barriers, hyper-sensitivity, compromised blood brain barrier, cognitive decline.

Women have relatively weaker connective tissues than men – women get ME/CFS more often. Also, connective tissue weakness can be induced by stress, mental and physical, and after periods of inflammation, infection = post-illness ME/CFS.

Sometimes our doctors look too hard for answers when science really works best when they start from simplest and move to more complicated. Many scientists seem to enjoy “the chase” more than achieving the goal. One doctor in the elite all-star panel quizzed in the article seems to be on to the “less is more” view of research.

Alistair Mills May 30, 2012 at 12:24 pm

There’s a four letter word more offensive than any,

it holds back the few puts a stop to the many,

you can’t climb that mountain, you can’t cross that sea,

you can’t become anything you want to be,

you can’t hit a century, they can’t find a cure,

she can’t think about leaving or searching for more,

because can’t is a word with a habit of stopping the ebb and flow of ideas,

it keeps dropping itself when we know in our hearts it’s not needed,

and saying don’t go when we could have succeeded,

But those four little letters that end with a “T”,

they can change in an instant, when shortened to three,

We can take off the “T”, we can do it today,

we can move forward not back, we can find our own way,

we can build, we can run, we can follow the sun,

we can push, we can pull, we can say

I’m SOMEONE who refuses to believe that life can’t be better,

with the removal of one insignificant letter.

“CAN”

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Snow Leopard May 31, 2012 at 6:12 am

It is interesting that the physicians as a group were the most pessimistic.

The question that worried me the most was the funding question. The NIH has a mandate to loosely associate research funding with disease burden. But current funding needs to be increased by a magnitude of order for it to be on par with other diseases. This means that for funding to be in the ball park (in, say, 10 years) as set by NIH mandate, it has to double in the next five years and then double again in the next five. (doubling in inflation-adjusted dollars…)

An approved treatment for CFS would save the economy billions of dollars a year and tens of billions if it led to remission.

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jeffrez June 10, 2012 at 7:34 pm

Disappointing that there was so much pessimism on finding biomarkers, as it seems that either a validated biomarker or a cure are the only two things that are likely to lend us any legitimacy in the eyes of most of the medical profession, and by extension, the culture.

Interesting though that the docs felt there would be an increase of subsets, esp. based on biological criteria according to Klimas. How exactly that is going to happen w/out biomarkers is unclear to me – I guess just symptomatically around a core group of symptoms? *Maybe* that would better help target treatments to specific groups, or even target research, but it doesn’t seem much more useful in practice than the case-by-case basis most docs seem to operate on now.

More women than men, which we’ve known for years, and close relation to female hormones: endocrine disruptors? Hello??

Difficult to consider the sad reality of the lack of funding for this devastating condition, too. Guess we just have to keep fighting. Again, more legitimacy would help with that. I think that can only happen with a biomarker. Nothing else is going to be accepted by the mainstream medical community, and as one of the responders noted, even a validated marker would take years to infiltrate and gain acceptance. But short of a treatment, what else is there?

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Cort June 3, 2012 at 3:06 pm

Thanks Kunia50 (err Mishmash) -fascinating about the weaker connective tissue in women than men and the stress connection as well….I had no idea it could effect so many different types of tissues either….Gotta learn about EDS

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MishMash June 6, 2012 at 3:02 pm

Haha. That one passed me by…

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