This is what we're up against

[melamine]

I bet their heads would explode if they saw my sudden onset (couldn't walk) after a vaccination.

@Snow Leopard - you know that would be another excuse for them to label psychosomatic! You "must have wanted" to get a bad reaction. Remember, we are not dealing with rational people. On some level they are scared. Their emotions have taken over. What they see is in conflict with what they were taught and what is reinforced by means of ridicule and professional threats.

 

[alex3619]

Psychogenic proponents have already moved to bypass any physical diagnosis. it is now possible to claim a psychogenic disorder if the symptoms are more intense or varied than expected from any physical disorder.

Their motto might as well be: its not disproven yet so we must be right.

 

[alex3619]

What is needed is to stop the mis-education of doctors first.

Not just miseducation, or lack of education, but lack of training in rational analysis. We need less evidence based medicine, and more evidence based practice. Yet the current system is a disincentive to evidence based practice, and EBM is more evidence based management now.

Doctors are not encouraged to be more than minimally up to date.

 

[melamine]

I do think that what we are seeing is a bit of projection. So many physicians are burnt out and dream of an excuse to walk away and collect disability. The suicide rate amongst physicians is higher than in any other profession.

In the US, these people are generally not the confident, satisfied professionals they would like us to see. As a group, I tend to view them as five year-olds. The compassionate doc is rare and should be appreciated all the more.

There are different kinds of PCPa in my experience and this is only one kind, one that I have sympathy for when they don't make me into their scapegoat. I appreciate that they are working in a system that ties their hands, mis-educates them, does not give them the support they need to provide services they may want to or may have wanted to before they burned out and gave up.

 

[Sidereal]

@heapsreal, here's what worries me. The doctors making those remarks are the ones who read Medscape. They are the ones who actually take the time to educate themselves about new medical information. How ignorant and sadistic is the opinion of the ones who haven't read anything since medical school apart from drug rep brochures and detective novels?

One middle aged male GP I dealt with for a while didn't know how to use a computer. He said his kids use "that Google stuff". I have no idea how he was able to practice medicine since he didn't seem to know anything but I found him useful because he knew all the best specialists in town and he found me annoying so would give me whatever referrals I wanted without any discussion. This way I got to speak to a couple of specialists very quickly and was able to rule out some conditions I was worried about without first trying to explain to a GP with sock puppets why the tests he ran looked highly abnormal and needed to be looked into.

 

[Valentijn]

FYI : Klimas is a specialist -- an immunologist ;-) Want to give her, her due.
Great post .

KDM is also a specialist - he's a cardiologist.

 

[Gamboa]

I've just gone on and posted a few responses and "liked" all the good ones.
For some reason I can't paste my comment here. If anyone is interested it is under Claire C. ( I just outed myself! )

 

[Gamboa]

@Gamboa,

Hi! I just wanted to say how sorry I am that you were treated so poorly by people who were your colleagues and friends before you became sick. Their loss not yours, but it is still hurtful. In a strange way I think this illness has selected some of the most beautiful and compassionate souls, and the "healthy" ones behaving so badly appear to be suffering from delusions of superior intelligence and E.H.H.S. (Empty Heart and Head Syndrome).

I am also beginning to wonder if most of these medical "yahoos" had their fingers crossed behind their backs when taking the Hippocratic Oath. Interesting that they have no shame in often posting their full names when leaving their spiteful and ignorant comments. I am sure that Santa Claus will be keeping a list and checking it twice in preparation for the arrival of Judgment Day at the North Pole.

If you ever make it back across the border for a visit, I would be glad to put you in touch with some pretty wonderful infectious disease doctors who specialize in ME/CFS and I am sure that they would feel lucky to have you as their patient.

Wally

@Wally Thanks so much, Wally, for your kind words.

I actually had a mini break through last night (maybe). I had shared a number of items about the IOM report on my facebook page and a colleague, an infectious disease physician and medical microbiologist who is a "friend" of mine but whom had never actually "liked" or corresponded with me at all on facebook (or in real life for years )actually "liked" one of the pages!!. I couldn't believe it since he was one of the worst of the worst. He was a very arrogant and "supreme being" type of doctor who thought everything he was taught in medical school was right, the CDC was right, the medical establishment was right and all other trains of thought were wrong. I had many arguments with him over the years about just about everything, as you can imagine. I have never talked to him since getting a diagnosis of ME/CFS since I knew his opinion on it. I have always wanted to get his help since he could test me for viruses and possibly treat for those at least. Or Lyme Disease. I have been bitten by ticks in Ogunquit Maine and could have Lyme for all I know but have just had 1 test, the Eliza one that isn't that great.

Regarding going to California to see an ID doc, I think about it all the time, but keep hoping that there will be some breakthrough research from Dr. Montoya or Dr. Lipkin that I could then use to get treatment here. I know... I am living in a dream world. I probably should just make an appointment with someone at Stanford. The waiting list is so long that there probably would be a breakthrough by the time I went and I wouldn't have to go

 

[snowathlete]

I think a letter to report these guys is probably a good idea. Other diseases would not put up with it so why should we?
We could quote the bit in the report which says it is not ok to just say "I am fatigued too" <not an exact quote.

 

[melamine]

And I'm afraid the term ME Specialist may need qualification. Here in the UK it can mean someone who is far from enlightened about the illness.

I was sent to a dedicated ME/CFS clinic at my local hospital only last year. There was thinly disguised derision of many of the symptoms I reported, and my question whether I might still be suffering from the virus that accompanied the start of my illness 18 months previously (after all I still had and still have many of the original symptoms) was greeted by a complacent smirk by way of an answer. The consultant in question has a website all about how to avoid fatigue with things like good sleep hygiene, healthy diet and minimisation of stress. There is scarcely even an acknowledgement there that people who have been diagnosed with ME/CFS actually have an illness properly speaking.

So when even "ME Specialists" can be benighted and unhelpful, what hope is there of finding enlightenment among non-specialists?

In NY I had a similar experience with a supposed CFS specialist who was on one of the 2P2 panels, I believe. He is engaged in some of the same CFS studies as some other doctors whose names are more familiar here. When I went to his office last year to be interviewed with the expectation of participating in one, he demonstrated a passionate interest in my psychological, work and social history, yet a shocking disinterest in my medical history. I was excluded for reason unknown. I could be wrong, but any study that excludes patients like myself is going to skew the definition in an illegitimate way IMO. Purity of type is just the kind of thing that is going to mess up the works when it comes to definitions based on external considerations rather than labs.

 

[Snowdrop]

If more patients filed complaints to their state health/medical board and these complaints start piling up against a particular doctor, you would see some action to address this issue to negate this type of behavior.

How do you figure it would help. I imagine that it would only lead to the medical community branding us 'malingerers' as troublemakers as well.

And as for at least some of the comments. No doubt the people making the comments see themselves as rational and not given to being gullible suckers of pesky patients. The problem as I see it is that it is more than just about medical opinion. While they may be smug about not being taken in they are showing their ignorance but they are also showing what kind of human being they are outside of their professional status.

How easy it is to call people who you know nothing about a bunch of bored, lazy, malingerers. That's not a medical opinion that's a nasty human being cloaking themselves in 'superior knowledge' despite knowing nothing at all.

Never mind. When this does get sorted, since, like some intemperate teenager, they've kindly put their idiotic opinions out there on the internet someone will be able to use these to write a nice long essay on how not to approach patients with as yet undefined medical illnesses who go to their Dr for help. They can be the 'poster MD's' for inappropriate behaviour. Maybe they will be sent to mandated empathy classes the way business sends naughty cubicle dwellers to anger management.

One can but hope.

 

[Snowdrop]

Right now Dr. Patient, myself and Jeff W. from PR are planning to create a website where doctors, nurses, social workers and healthcare professionals world wide can share their stories for other doctors to read and we already have some great ideas how to start this project.

Wow. That's a great idea. I wish you three the best with getting it underway. Kudos for making this effort.

 

[SDSue]

I spent a little time on the internet yesterday:

Dr. Wallace Schwam| Internal Medicine

Absent hard biological evidence, Chronic Fatigue Syndrome might lots of people as "Sick" who are in monotonous jobs, bad marriages, or plain bored with life.

After 46 years experience, he retired to his CA home, from which he throws abusive barbs on the internet.

Dr. Dario Zagar Neurology

The new name seems to be nothing more than an exercise in rebranding. At best it is redundant--what additional information does the word "systemic" provide to "exertion intolerance disease". Next, given the lack of clear etiology in most cases, it still remains more of a syndrome than a disease; there could potentially be various causes for the same constellation of symptoms. That makes "exertion intolerance syndrome" a more accurate moniker; given that people have fatigue even in the absence of significant exertion in most cases, why is that any better a description than "chronic fatigue syndrome"? Well, at least they didn't choose myalgic encephalomyelitis, which is simply incorrect.

Only 12 years experience in CT, President and managing partner with 8 other neurologists. His comments make him seem reasonable.

Dr. Kathy Pittaway Psychiatry/Mental Health

This sounds way too much like de conditioned individuals w/o motivation or desire to resume activity. Please, let's not pathologist all human experience.

Age 63, VT, seems to be retired, thank goodness.

Dr. Phil Gauthier Internal Medicine

great, disability here I come! glad I got that plan a long time ago.

20 years experience, head of hospital transplant team in CO. I'd imagine he sees ME/CFS patients as EBV can be reactivated in transplants plus the trauma of the surgeries could trigger disease.

Dr. Dan Mullin Emergency Medicine

So CFS/ME is a disease where patients are usually middle-aged, tired, depressed, have sleep difficulties and muscle aches. Lab work is essentially normal, and it's treated with better sleep habits, healthy diet, exercise, NSAIDs, antidepressants, etc. I think the incidence is much higher than what is published. I like the treatment but hate the diagnosis. We, as physicians, have to stop giving out so many diagnoses, especially those that sound dangerous like Myalgic Encephalomyelitis. Patients hold onto those diagnoses forever, thinking they have something real and serious. The symptoms are real and easily treated, but it's not serious and doesn't need a diagnosis. Everyone has these feelings during their lives...some for a couple months, some for six months, some for much longer, some just handle them better than others.

12 years experience at a major university (teaching???) hospital in PA.

Dr. William H. Warrick III MD Family Medicine

Freud had a better name for it: Nuresthenia.

Age 71, retiring in June. Worked for an Integrative Med Practice in FL.

Dr. Donald Gehrig Internal Medicine

aka, major depression with somatic complaints...which is still just too inconvenient and unacceptable for most and gets no extra funding for IOM types...why would the IOM be the decider on this? major depression IS real...not dealing with that is UNreal

Independent practice in MN.

Dr. robert bayer General Practice

what a huge pile of crap......bring on the clowns

Unfortunatley, there are too many Robert Bayers to pinpoint which one is responsible.

David Baker Physician Assistant

Disability here I come. Definitely declining in my occupation, social and recreational ability at 50. I am sure I have some cognitive decline in a burgeneoning computer age. I definitely have post exertional malaise. My workouts and 100 mile bike rides are followed by a crash and even occasional post exertional orthostatic hypotension. I am almost there to disability retirement. Why not -its a carreer choice for so many of my patients.

This is another basket diagnosis that will be used by lackluster practitioners to avoid a proper work up and possible discovery of true pathology. I see this with FM patients that have bursitis, arthritis and tendonitis in varying degrees with a PCP who is to busy to workup multiple problems.

There are 2 David Baker, P-AC's. One with a Neuro Pain Medical Center in CA (my money's on this one) and another in NC.

Dr. Paul Rochmis

First it was neurasthenia, then non-articular rheumatism, then psychogenic rheumatism, then fibrositis, then fibromyositis, then back to fibrositis, then fibromyalgia syndrome......now "SEID." When will it end?

Rheumatology, retired.

Dr. wahid tazudeen Neurology

Um...you might want to get a second opinion on your diagnosis. That sounds like something else.

Hospital in IL.


So that's the roll call. There are several names from @Sidereal 's initial post missing, but there were too many docs with those names so I couldn't narrow it down to just one. It's interesting to note that apx 40% of those identified are retired.

 

[Valentijn]

I've read the other medscape comments by Dr Robert Bayer, and he sounds like quite a dinosaur himself. Probably on the verge of retirement, if not retired yet, and sounds pretty unhappy about everything in general.

 

[CantThink]

And I'm afraid the term ME Specialist may need qualification. Here in the UK it can mean someone who is far from enlightened about the illness.

I understand and agree, but I guess what I term as an ME specialist would differ with the majority in the UK (in the NHS for sure).

I personally do not regard the CFS service consultants as ME specialists (there are none in the UK to my knowledge, except to an extent Myhill). My local CFS service is not aimed at ME... It's aimed at chronic fatigue (as a symptom) under the guise of CFS (the syndrome). They don't even include ME in the CFS service name where I live.

 

[CFS_for_19_years]

@SDSue, thanks for going through the list of pathetic posers on Medscape. It seems that retired docs can say anything they like, as if they've been holding their breath throughout their long careers, and now they can tell us all how they really feel.

 

[Valentijn]

It seems that retired docs can say anything they like, as if they've been holding their breath throughout their long careers, and now they can tell us all how they really feel.

They're also the ones whose medical knowledge is the least up-to-date, and probably didn't get much education regarding ethics. They were probably hating on MS patients long before we came along, and never got over being forced to treat them as human beings.

At any rate, they don't seem to be representative of the medical field in general.

 

[CFS Facts]

The only thing that would persuade some of them would be to come down with it themselves.
Our best advocates are those who start their testimony "I was a denialist doctor until I got sick myself. Now I can tell you it's real."

 

[SOC]

Excellent digging, @SDSue! So it looks like most of the seriously nasty ones are retired docs who: 1) have nothing better to do than snark at people on the internet (ie no personal life), 2) probably spent many decades abusing patients with unexplained illnesses and so feel obligated to continue with that position to save face, and 3) have no better internet intelligence than teenagers and don't realize they're telling the entire world what nasty idiots they are.

So the good news is that we don't have to worry about most of those creeps. They're toothless monsters.

Dan Mullin and Phil Gauthier, however, still have long careers ahead of them and need an attitude adjustment before they harm more innocent patients.

 

[SDSue]

This exercise taught me one thing: With a few exceptions, it

Excellent digging, @SDSue! So it looks like most of the seriously nasty ones are retired docs who: 1) have nothing better to do than snark at people on the internet (ie no personal life), 2) probably spent many decades abusing patients with unexplained illnesses and so feel obligated to continue with that position to save face, and 3) have no better internet intelligence than teenagers and don't realize they're telling the entire world what nasty idiots they are.

So the good news is that we don't have to worry about most of those creeps. They're toothless monsters.

Dan Mullin and Phil Gauthier, however, still have long careers ahead of them and need an attitude adjustment before they harm more innocent patients.

I couldn't agree more! I had to really hold back on my post and stick with "just the facts, ma'am", but those facts sure do say a lot, don't they!

I learned a lot in the process. Most of the crap is coming from retirees and/or worthless trolls, and there really is no need for us to waste a lot of time on them. The few that are in power positions, however, do need to be educated!