JAMA -"Advances in understanding the Pathophysiology of Chronic Fatigue Syndrome" by Anthony Komaroff

Uhhhhhhhhhhhhhhhhhhhhhh.... no. Just. No.

 

Don't t despair.
Although I feel that there are many routes to the same end state, there will be common pathways which may help define subsets.

I think we are beginning to scratch the surface as the technology now exists and is evolving to enable scientists to dig a bit deeper.

If we can drill down subsets this could help re mechanism.

Existing drugs can be deployed/ tweaked could be used once we know more re mechanisms.

There is no unified theory of cancer despite the millions that have been spent, but there are subsets and treatments.

We don't know the detail of many conditions but they have treatment options and life is more manageable/ improved for patients. I would accept improved quality of life and proper care and management pathways, this alone would completely change my daughter's life.

Genetics may offer the means to take the guesswork out of what will work for each patient. Sadly many do not have the reserves to cope with adverse reactions.

Whilst there is much we don't t know, sometimes things advance via knowing what doesn't t work as much as what does.

 

Yes, totally right, @rvallee!

One of the authors of this study might ring a bell. As I understand it, this author viewed ME as a psychological condition, and headed the CDC dept. in charge of ME for a time.

 

When asked by a major American TV show what had happened in Incline Village, Reeves, one of the authors and the CDC head, answered "That was hysteria."

 

I hope you’re wrong on the timeline, but unless appropriate funding I think your estimates are realistic.

It’s not that much of a comfort to the ME community, but I do find the history of HIV/AIDS uplifting. From the devastation to today. From the start early 1980’s, when it was a death sentence til today, being able to live quite a normal and long life, from what I understand. Think there is over 40 FDA approved drugs for the disease. For ME as we know, there is 0 - zero -.

It has costed hundred of billions of dollars to achieve that. Billions and billions of dollars each year from the start til today. But it proves it is possible to advance a major problem relatively fast. Unfortunately many of today’s ME patients haven’t got more time to wait and lose. The advantage funding-wise, was of course that you died directly from HIV/AIDS. And though they really had to search and dig deep for years, they probably had a head start narrowing down causation compared to ME.

It is hard thinking of 15 years beyond he.. , then thinking of possible improvements in decades. Makes you really wonder if any of us realistically will experience the benefits of research, no matter of how positive and hopeful. For my own sake I just don’t know any longer. As things stands, my personal take on this, is that we all are doing what we can to improve things for future generations, for the kids. That’s valuable, but wish and hope some of us again may experience life closer to what it was before ME.

 

Is part of the problem that Dr Komaroff is the one who repeats this message? Could it be that doctors who read journals see his name and switch off now.

I'm concerned that doctors who have entrenched views need to see someone else before they start to pay attention. It's unfair and I don't feel good saying this.

It may be that we need new doctors to write these updates.

 

@Perrier and @Peter

Several years ago, I was told by a medical professional with very little knowledge of ME, there would never be a treatment in my life time. Not an uplifting thing to say, and incorrect, as there are some treatments, as listed in physicians' manuals. Not THE treatment we wish to see but some.

We are fighting complex multiple battles: the stigma, lack of treatment, and little to no medical education.

In all these battles we are making progress. In the past 5 years, more scientists, and other academics have gotten on board. Private funding and even government funding is increasing. Advocacy/activist groups have strengthened, and new ones have emerged. We have more media outreach about ME - films, podcasts, forums, blogs etc.

All this and more encourages me. I am of course hoping for an effective treatment in
my lifetime. Sooner, rather than later.

Overall, momentum is gaining. I'm as disappointed as anyone when we are pushed back, but I think overall, there is
progress on some important fronts. I hope we see improvements accelerate very soon.

 

Thank you dear Doka Girl for your encouraging words. Thank you. The treatments have all been tried on our end; and they are not really effective. They spike the system, which then crashes horrifically. Or there are intolerances to so many meds amongst PWME. But your kind words have touched me.
@Amw66
And you have a sick daughter too; my heartfelt sympathies to you. I walk this road too. Nothing is as bad as a parent watching her son or daughter suffering immeasurably and not being able to help. My GP used to say:" les parents d'enfants malades deviennent fous"

@Peter
I have also in a non stop way kept bringing up AIDS. What was it that gripped us, those of us who stood on the side lines? For me it was seeing emaciated young men looking as if they had just come out of the soviet gulag or a nazi camp. The images haunted us all, didn't they? Then started coming the death of stars, dancers, artists. Then came our fear of unprotected sex. Aids in one way or another touched each of us.

And with ME, what do we have? Not enough images, not enough in the media about patients who are lying in bed, thin, gaunt, unable to walk, and often young. Unrest was spectacular that way. But we would need this multiplied non stop, on TV, etc. Then there would be more interest. But unfortunately, when the image of the illness is a 'woman' who is 'tired' and needs to lie down a good deal, there will not be much interest. Deep prejudice and judgement comes into play. I am deeply grateful also to Whitney who has accepted to be one of the faces of this illness. But more of the devastation needs to be shown. Also, the suicide rate is high in this illness. This too needs highlighting. Sadly, that is the sort of age we live in.

Forgive me for digressing here, the thread was about the value or lack thereof of the studies.

 

@Perrier,

Thank you for your reply.

Yes treatments - I understand what you mean about treatments not being effective, and causing symptom flares. PwME, as we know are drug and chemically sensitive. Even alternative herbs etc., can make me feel worse. I've tried a lot of alternative treatments to put it mildly.

I agree, the critical mass or volume of articles about suffering, and all biomedical issues about ME needs to be much greater.
Those in the other camp have as you say instilled a deep prejudice about ME. Somewhat easy to do, as humans have this tendency to othering anyways.

Perhaps our discussion is a digression, although it does involve what we know, and don't know about ME, and how this effects us right now, and in the future.

 

https://www.youtube.com/watch?v=65en-A9Um3w

Cytokine theory of depression
Factor x in the blood

 

Looks like Dr. Komaroff’s article is reaching a large readership.

https://www.healthrising.org/blog/2...yndrome-article-tony-komaroff-unifying-model/

 

Dr. Komaroff's online article in JAMA currently has about:

31,000 views. (07/12/19)
35,000 views.
42,000 views.
47,000 views.
65,000 views. (07/24/19)




https://jamanetwork.com/journals/jama/fullarticle/2737854

 

I heard (from where I cannot recall, just that it was indirect, but from a source I deemed credible for this type of information) that researchers who submitted papers there got rejection notices saying that NEJM didn't publish on the topic of CFS.

They may since have changed their mind, or may in the future. It's been a while since I heard this.

JAMA, however is a good publication.

The article isn't perfect but it's good for some situatiuations. And he does try to note where there's plenty of papers on the same topic (like NK cell function).

Nobody can really expect the science to be developed under existing conditions. I mean, they do, but that's unreasonable and if they are reasonable, they'll work this out if given the right data.

 

There's a thing that's a strategic disease plan. NIH writes these for other diseases. We should lobby for one. Some of them have benchmarks by timeframe.

Mod note: Part of post moved to new thread.

 

With just above it a "trending" Exercise Therapy May Benefit Chronic Fatigue.

Although that the best that can still be said at this time is "may", after 3 decades of insisting it would, is a serious indictment of how poor and aimless this body of research is. "May" is simply not the basis for guidelines, practices and policies and this disconnect is a serious problem.

 

Willow, what a voice of reason you are; you are making my day. Why has this not been thought of before. I am rather over satiated with conferences reporting there is this and this and this and that, and somehow nothing is pointing to the cause of this illness or at least to some reasonable way of handling it. We go to Mars but we can't deal with this in any kind of time frame.

 

MEAction highlighted the need for a strategic plan in its letter and meeting with Collins last year. (https://www.meaction.net/2018/12/17/meaction-met-with-nih-director-heres-what-happened/ and http://www.meaction.net/wp-content/uploads/2015/05/MEAction-Letter-to-Francis-Collins.pdf)
fwiw - As part of the RFI responses to NIH this year I (and likely others also) stressed the need for a strategic plan.

 

I may have repeated this about a dozen times or so throughout my comments. Hopefully the message gets across.