Articles on the release of the IOM report

[Wally]

Thank you, Wally, what you wrote is terrific! Thank you for persisting. Thanks to everyone who tries to correct and expand upon these reports.

Thank you. Only one of my comments made it through the New York Times spam filter (and it had a typo ).

I have tweaked some of my comments (that were posted above at Post #58) in order to correct some of my pesky typos and to add a few more reference ideas for information that might be helpful to include in a comment (either for current or future articles). Feel free to use any of these comments in whole or part.

The second comment is quite long because of all the references. You may need to pick and choose what you are able to fit into a comment box. Alternatively, you can split up the comment and try to submit multiple comments (this is why tag teaming comments with a buddy or two can be quite effective).

Also, some sites might not publish the comment(s) if they think you are a "spammer". By submitting more than one comment or if you add links to a comment, their software might label you as a possible spammer. If this happens your comment could sit for awhile in moderation and either eventually get posted or just never show up. Each site is different, so what will make it through moderation and what will disappear into their trash bin is a bit of a guessing game.

I wonder if patients (and our supporters) will be considered "spammers", if we try to sell the truth about this illness through the comment sections of online papers/journals or if this could be a great advocacy tool for a group of patient warriors?

Here are the three comments that I have drafted. Perhaps others will add a few of their own suggestions?

(1)

For many patients, the illness (known as “Myalgic Encephalomyelitis” (M.E.), which was renamed in the U.S. to “Chronic Fatigue Syndrome” (C.F.S.), is a complex neurological, endocrine, immune illness with a suspected viral etiology and possible genetic, inflammatory and environmental toxicity components. (Chronic Fatigue Syndrome (C.F.S.) is the name that the Centers for Disease Control ("CDC") gave this illness following two large cluster outbreaks that occurred, in the 1980's, in Incline Village, Nevada and Lyndonville, New York.)

Many of the symptoms of this illness have similarities to other illnesses such as Acquired Immune Deficiency Syndrome (AIDS), Multiple Sclerosis (MS), Amyotrophic Lateral Sclerosis (ALS), Autism, Gulf War Syndrome (GWS), Arthropod Borne Illness Diseases (i.e. Lyme, Borrelia and other tick associated bacterial pathogens), Chronic and Acute Herpesvirus Illnesses, Parkinson’s Disease, Chemical and other Environmental Sensitivities.

These types of illnesses seem to be expanding exponentially around the world. We don’t have any more time to waste to try to push the science forward to crack the code on why we seem to be plagued with such chronic and devastating illnesses.

(Note – References could be added to this comment to identify top physicians and scientists who are working to try to solve this illness, but they need help from both private donors and the government to fund these projects. Here are some examples of research projects/institutes that people might want to reference - Open Medicine Foundation (http://www.openmedicinefoundation.org/), Stanford (http://med.stanford.edu/chronicfatiguesyndrome/about/projects.html), Columbia (http://cii.columbia.edu/research.aspx?8Fo92f) and, Simmaron (http://simmaronresearch.com/research/).

(Note - I have rec'd a comment from a Forum member (whose opinion I respect) that the word "exponentially" may not be very effective (regardless if it can be supported with facts) because it may not seem believable to the target audience. So, you may want to consider removing or modifying this word if you decide to use this comment.)


(2)

Understanding and change will not happen unless we are willing to open our eyes and see the real truth about this illness.

Please consider taking a few extra minutes to watch this short video to help open your eyes to the real story of this illness.

For more information about this video, see the Facebook Page and Website for this documentary.
1) https://www.facebook.com/CFSDocumentary
2) http://mecfsdocumentary.com/

If you want to know more about research into this illness, check out what these world-renowned physicians and researchers are working on. http://www.openmedicinefoundation.org/

(3)

The bottom line is that this Report from the Institute of Medicine about M.E./C.F.S. will only be more words on paper, if the U.S. Government does not adequately fund research, treatment and education of this illness.

Perhaps one or more of these four short videos will help people understand the obstacles that patients face in trying to find answers for this illness.

1) “Forgotten Plague" -

and

2) “Canary in a Coal Mine” -

3) “Voices from the Shadows” -

4) “Primetime Live” (1996) - http://youtu.be/AW0x9_Q8qbo

For information about “Forgotten Plague", go to the film’s website at http://mecfsdocumentary.com/ and Facebook Page at https://www.facebook.com/CFSDocumentary

For more information about the “Canary in a Coal Mine” documentary, go to the film’s website at http://www.canaryinacoalminefilm.com/#!and and Facebook Page at https://www.facebook.com/canaryfilm/info?tab=page_info

For more information about the “Voices from the Shadows” documentary, go to the film’s website at http://voicesfromtheshadowsfilm.co.uk/ and Facebook Page at https://www.facebook.com/VoicesfromtheShadows

In addition to the videos identified above, there are several books that have been written to provide some historical background about the illness.

1) Osler’s Web by Hillary Johnson. For more information about the book go to http://www.amazon.com/Oslers-Web-Labyrinth-Syndrome-Epidemic/dp/051770353X .

2) Plague by Dr. Judy Mikovitz and Kent Heckenlively. For more information about this book go to http://www.plaguethebook.com .

(Note - The references to books written about the illness may not be something you want to include in a comment. These books may also be controversial to some in the ME/CFS Community, but I believe they both provide an interesting historical perspective (at least through the eyes of each author) to this illness. There may be other books that have been written, which might also be worth mentioning, but these are the two that I have read that set the stage for what was happening with this illness during different points in time.)

*Edit - If you watch the videos that I have selected, I think you might understand how these short videos can express some of the information that we want people to hear in a much more effective way than only relying on written words.

 

[beaverfury]

http://www.scientificamerican.com/article/chronic-fatigue-syndrome-gets-controversial-redefinition/

'The report also attempts to simplify diagnostic criteria for the disease, addressing concerns that previous definitions were too complex. For instance, people who suffer from a mental illness can now be diagnosed with SEID. They had previously been excluded from a CFS diagnosis because the fatigue could be a symptom of depression.'

Um, no.

 

[beaker]

.
.
The absolute worst possible reporting of the IOM Report and name. It could hardly be worse or more trivialising:


'Renaming Fatigue, How Tiredness May Be A Disease'
http://www.koat.com/news/renaming-fatigue-how-tiredness-may-be-a-disease/31231984

'Do you have trouble waking up.. How tired are you in the morning?..... "I am so tired I would love to stay in bed" ...... endless film of people getting out of bed in the morning..... now its a disease......'

"I've been tired for 15 years" trills the presenter happliy. "We are usually pretty sleepy here in the mornings ... Here's an app we use to help you Wake Up!"
.

This link is empty. I searched the site and couldn't find it. Hopefully they took it down.

 

[Roy S]

Trinidad & Tobago Guardian Online
　
　
　
Finally, Chronic Fatigue Syndrome will be taken seriously
　
http://www.guardian.co.tt/lifestyle...onic-fatigue-syndrome-will-be-taken-seriously
　
　

 

[Never Give Up]

Anyone care to head over to Medscape and rebut some of the recent damaging physician posts?

 

[Cheshire]

Anyone care to head over to Medscape and rebut some of the recent damaging physician posts?

Not damaging, and quite interesting

Dr. G W| General Practice 2 days ago
I'm gamekeeper turned poacher too. Dr who suddenly got SEID 17 yrs ago with all the major IOM criteria – from a fit, happy, clear blue sky following a nasty virus. No p/h of abuse (except as a junior Dr!) or psychy symptoms.

I used to find such pts demanding (not reassured by my or hospital routine tests that there's 'nothing seriously wrong'), tiresome (kept returning and defensive), disconcerting (I failed to help them and they let me know it by trying to tell me my job) and sometimes disgusting (yes, disgusting - they weren't really ill surely? - we all feel tired don't we? - I've got cancer pts to spend time on not these 'tired all the time poor dears' who present these weird symptoms of a probably non-existent illness). Similar disgust expressed here I see. Pts also got into weird therapies (unsurprisingly as I didn't help them one bit) which just proved they were unbalanced. So I get it, you still-cynical medicos (not all or even the majority), I really do.

It's odd tho, the level of haughty hostility manifested. Why? I suppose there always has to be some runt or scapegoat we can vent our own pent up frustrations and blame upon? Those products of all that is wrong and irritates us with our society and representatives of the patient clientele who waste our time. These 'worried well', sham, disability benefit claimants will do, eh? Well the vilification of the sick and unemployed is a big, UK Gov-sponsored bandwagon it's OK to jump on isn't it? Fed by TV docus which people forget are mere entertainment of the 'come and look at the freak show' sort. Or maybe it's 'we can while away a few minutes and have some sport by provoking these benighted fools who are not as clever or wise as we'? Patient-baiting wouldn't be tolerated in the Surgery but in Comments fair game....?

Why is it that despite a comprehensive Report demonstrating its reality and physical nature by Drs much better qualified to clarify this disease some of you manifest evidence-resistance of the kind you accuse us of and still hold onto your anecdotal opinions? 'Oh I recall a few patients who struck me as hysterics' – so blithering what? Did they really fit the bill with these criteria? - criteria known about for decades by Drs who actually treated patients rather than merely pontificating.

Essentially Depression?! Negligently sloppy – by what definition? Agnostic because have to admit it's impossible to be sure but in reality leaning largely to scepticism. Seems like a minor 'omniscience-complex' - a sort of delusional state that thinks your own limited but sceptical view is likely to still be correct despite any decent information such as this Report. I wonder what psychiatrists of the future will make of it? Ah but it's hard to admit that you were plain wrong and probably did some of these pts a major disservice. So maybe it's self-protection? – you hold on in there to protect yourself against the sense that you haven't been such a great, wise and compassionate Dr after all. You take comfort from the collusion of other sceptics. Sticks in the craw to admit you've been wrong. I can identify with that. You wonder why people react to your comments and see yourselves as somewhat misinterpreted and hard-done-by by us but seem to lack the self-awareness to see why. You sceptically pontificate about something deeply personal and distressing to us, that's why! Am I bitter? - hell, yes!

Instead of using my hostility to confirm your presuppositions of just how loopy we pts all are take some time for self-examination – humanity generally is pretty loopy after all. (My own GP is a model of helpfulness and humility which has aided no end – but still doesn't know what to do to help!).

Does it matter what some Drs think? Of course, if your opinions affect how you treat people - you are the gatekeepers to what pts need. You have power. To be ill and not believed by those in power is very threatening. To be told your symptoms are mere somatisation and that 'we need to change your mind' (when you know it's not in your mind) is threatening - it's frankly Stalinist. We know it's not somatisation and furthermore we know you don't really know it's that either, based (erroneously) as it is on inconclusive yet endless studies of CBT and GET and psychoillogical speculation, which is why we are resistant. People who are threatened react with defensive anger. Even if we are somatisers then we are really screwed up individuals who need care not scorn. Nah – give me the scorn any day, I'm used to it and it at least means you're treating me as half-normal. But I'd prefer understanding and compassion which is what Drs are largely known for. You know we could work together on this. Some of you drop the judgementalness, examine your own health beliefs, and we'll forgive, admit we didn't always help our case, then we can embrace in warm fuzzies and move on hand in hand towards the broad sunlit uplands.... I have a dream.

I could rant on but that's enough.

 

[eafw]

'For instance, people who suffer from a mental illness can now be diagnosed with SEID. They had previously been excluded from a CFS diagnosis because the fatigue could be a symptom of depression.'

Um, no.

This is actually a very badly written article, and was published in Nature too (low standard of writing and reporting - where do they get these useless journos from, ?)

What they are probably trying to convey is that depressive disorder used to exclude people from a ME/CFS diagnosis and now it doesn't, no more than depression would exclude a diagnosis of cancer or rheumatoid arthritis for instance. One of the comments on the Nature article picks up on this as well. Badly communicated in the original piece though.

 

[Valentijn]

"Psychoillogical" is my new favorite word

 

[worldbackwards]

Dr. G W| General Practice 2 days ago
I'm gamekeeper turned poacher too.

I'm not sure if that's quite the metaphor, but he's good!

 

[Never Give Up]

Not damaging, and quite interesting

Yes, this one is wonderful! And one of the 2 that I was referring to, the one by "Bill Wilke MD-Retired Rheumatologist, Cleveland Clinic Foundation and author of The Cleveland Clinic Guide to Fibromyalgia." was nicely rebutted overnight. This one:

"Dr. anthony gear| Rheumatology14 hours ago


The symptoms are real and disabling but it is no more than the extreme end of a normal spectrum. Medicalising and giving it odd names eg ME, is counterproductive. 80% percent of successful management is to get those with the sympoms to recognise it as part of a normal spectrum and not a disabling disease!"

Could still use an intelligent response, one that will educate the comments readers.

 

[Snowdrop]

This just in from the CBC website:

http://www.cbc.ca/news/canada/manit...iteria-for-chronic-fatigue-syndrome-1.2966039

I'm afraid I only skimmed the article but it looks to be rather good.

There's even a poll at the end of the article asking if you believe in SEID as a real disease!

 

[Never Give Up]

This just in from the CBC website:

http://www.cbc.ca/news/canada/manit...iteria-for-chronic-fatigue-syndrome-1.2966039

I'm afraid I only skimmed the article but it looks to be rather good.

There's even a poll at the end of the article asking if you believe in SEID as a real disease!

This is the poll:

Do you believe ME/CFS, now known as SEID, is a legitimate disease?
No. Since it can't be diagnosed by medical testing I think people say they have it to get time off work.
Yes. Even though it can't be diagnosed by medical testing I believe the disease is real and the symptoms are debilitating.
I believe the disease is legitimate but I also believe there are folks who say they have it when they don't, and get away with it because it can't be diagnosed by medical testing.

 

[SpecialK82]

This is the poll:

Do you believe ME/CFS, now known as SEID, is a legitimate disease?
No. Since it can't be diagnosed by medical testing I think people say they have it to get time off work.
Yes. Even though it can't be diagnosed by medical testing I believe the disease is real and the symptoms are debilitating.
I believe the disease is legitimate but I also believe there are folks who say they have it when they don't, and get away with it because it can't be diagnosed by medical testing.

Just voted - the Yes vote is clearly winning

It's easy to vote, no sign-in necessary

 

[Valentijn]

Do you believe ME/CFS, now known as SEID, is a legitimate disease?
No. Since it can't be diagnosed by medical testing I think people say they have it to get time off work.
Yes. Even though it can't be diagnosed by medical testing I believe the disease is real and the symptoms are debilitating.
I believe the disease is legitimate but I also believe there are folks who say they have it when they don't, and get away with it because it can't be diagnosed by medical testing.

I've submitted a comment to the newsite, pointing out that their poll is presenting inaccurate presumptions in the response options. Obviously ME/SEID and/or objective disability can be diagnosed by medical testing, via the 2-day CPET or TTT.

 

[Aurator]

This article starts off promisingly, but is seriously undermined by the concluding comments from a Dr Sharistha Peerzade. I'm clinging to the hope that her words are misquoted:

"[Hackshaw] emphasized the importance of first ruling out other conditions when symptoms might point to chronic fatigue syndrome, as did Dr. Peerzade, who sees many chronic fatigue patients in her primary-care practice at Mount Carmel Medical Group’s Pickerington office. Peerzade said patients often develop the symptoms after a viral infection.
''“Cognitive therapy can help. I’ve seen exercise help them a lot,” she said. “I’m hoping that doctors, especially, will take this a little more seriously.”''

She "hopes that doctors, especially, will take this a little more seriously". Hardly warring words, and it would be nice if she could lead by example and read up on ME/CFS before she takes responsibility for patients suffering from the disease. Or when it says she "sees many patients in her primary care practice", maybe we're to understand she does just that and no more, stepping over their outstretched bodies in the corridor, on her way to treat patients who have diseases she takes not a little but a lot more seriously.

 

[Sushi]

Maybe the worst TV reporting on it--sadly, my local ABC affiliate. I just wrote to them. Anyone else? http://www.koat.com/tv/contact

 

[Never Give Up]

Maybe the worst TV reporting on it--sadly, my local ABC affiliate. I just wrote to them. Anyone else? http://www.koat.com/tv/contact

OK, so, that was so bad it was funny!

 

[Wally]

I am really thinking there should be a "Hall of Shame" for some of these reports and outrageous comments made in response to articles about this illness. As a historical reference, they could be golden to set the stage for what patients in the good old days were faced with while dealing with a "serious biological driven illness"

 

[Aurator]

That definitely is one of the most appalling misrepresentations I've seen in recent times. Every news article of that kind is a slur on patients, practically amounting to slander, and it does untold damage to their welfare.

I am really thinking there should be a "Hall of Shame" for some of these reports and outrageous comments made in response to articles about this illness.

I think the Hall would be so big, Wally, it would occupy a whole website in its own right.

 

[Valentijn]

Maybe the worst TV reporting on it--sadly, my local ABC affiliate. I just wrote to them. Anyone else? http://www.koat.com/tv/contact

They pulled down their horrible articles and video a couple days after putting them up. I think quite a few people complained, myself included. All that's left is the copy someone (a patient I think) put on Youtube.

KOAT's problem is that their medical "expert" is an anti-CFS bigot. Hopefully they've learned he can't be trusted.