Why your doctor may not be listening to you

[Dr.Patient]

MECFSFIBRO should be integrated into all chronic disease clinics. We suffer as much as, if not more, than heart failure, kidney failure, or hepatic failure patients...

 

[CFS_for_19_years]

MECFSFIBRO should be integrated into all chronic disease clinics. We suffer as much as, if not more, than heart failure, kidney failure, or hepatic failure patients...

In case you haven't heard, Dr. Nancy Klimas, a CFS/ME specialists who also treats AIDS patients, has said (on record) that given a choice between our disease and AIDS, she'd rather have AIDS. (Now don't make me go look for the quote; I think it's common knowledge here!). She says patients with CFS/ME are "much sicker."

 

[Dr.Patient]

In case you haven't heard, Dr. Nancy Klimas, a CFS/ME specialists who also treats AIDS patients, has said (on record) that given a choice between our disease and AIDS, she'd rather have AIDS. (Now don't make me go look for the quote; I think it's common knowledge here!). She says patients with CFS/ME are "much sicker."

Yes, I am aware of the quote, thank you!

 

[Leopardtail]

In case you haven't heard, Dr. Nancy Klimas, a CFS/ME specialists who also treats AIDS patients, has said (on record) that given a choice between our disease and AIDS, she'd rather have AIDS. (Now don't make me go look for the quote; I think it's common knowledge here!). She says patients with CFS/ME are "much sicker."

In similar vain Sarah Myhill says ME patients show similar levels of damage to cancer patients receiving Chemotherapy.

 

[Undisclosed]

In case you haven't heard, Dr. Nancy Klimas, a CFS/ME specialists who also treats AIDS patients, has said (on record) that given a choice between our disease and AIDS, she'd rather have AIDS. (Now don't make me go look for the quote; I think it's common knowledge here!). She says patients with CFS/ME are "much sicker."

I don't believe she said she said she would rather have AIDs. She said she would rather treat AID's patients because the treatment is much more clear cut and patients are easier to treat because of clear treatment parameters. This has often been misattributed to Klimas but correct me if I am wrong.

 

[zzz]

Thanks everybody, for your support and interest in this topic! I'll have more to post in a while. But I thought I could respond to one quick point now.

I don't believe she said she said she would rather have AIDs. She said she would rather treat AID's patients because the treatment is much more clear cut and patients are easier to treat because of clear treatment parameters. This has often been misattributed to Klimas but correct me if I am wrong.

Here is her exact quote, which can still be found on the New York Times site:

"My H.I.V. patients for the most part are hale and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my C.F.S. patients, on the other hand, are terribly ill and unable to work or participate in the care of their families.

I split my clinical time between the two illnesses, and I can tell you if I had to choose between the two illnesses (in 2009) I would rather have H.I.V. But C.F.S., which impacts a million people in the United States alone, has had a small fraction of the research dollars directed towards it.”—Dr. Nancy Klimas, AIDS and CFS researcher and clinician, University of Miami (“Readers Ask: A Virus Linked to Chronic Fatigue Syndrome,” New York Times, October 15, 2009)​

 

[Leopardtail]

Y'know what, @zzz, when I read about your meeting with your doctor and the apparently-equal relationship you have with him, I thought "it sounds as though zzz is probably a man". And you are!

I think most women will understand the significance of this. I can imagine most doctors reacting with anger and aggression to a woman patient laughing at them. From my interactions with doctors - including female ones - I have been given the strong impression that I am expected, as a female, to be submissive and compliant, not to question what my God-like doctor says.

I've tried; believe me, I've tried. I've walked on eggshells, I've talked quietly and pretended to be calm (this is quite convincing, it seems) but they still will not listen.

So, you fellas - get out there and tell your doctors what's what. Sadly even in this modern age, the rest of us may be dependent on you doing that.

Leaving aside the gender inequality I have found the two largest barriers to acceptance are:

1. the lack of an agreed Etiology (cause)
2. the lack of a diagnostic test

The other thing I have found is that younger doctors are significantly less stupid when it comes to ME.
I have the opposite problem to you - female doctors get their panties in a bunch when challenged by a man. I do know what you mean re the walking on eggshells though (in general).

 

[Undisclosed]

My H.I.V. patients for the most part are hale and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my C.F.S. patients, on the other hand, are terribly ill and unable to work or participate in the care of their families.

I split my clinical time between the two illnesses, and I can tell you if I had to choose between the two illnesses (in 2009) I would rather have H.I.V. But C.F.S., which impacts a million people in the United States alone, has had a small fraction of the research dollars directed towards it.”—Dr. Nancy Klimas, AIDS and CFS researcher and clinician, University of Miami (“Readers Ask: A Virus Linked to Chronic Fatigue Syndrome,” New York Times, October 15, 2009)

This what I was getting at -- a clinical choice of what she would like to treat not that she would rather have HIV as an illness.

 

[Dr.Patient]

This what I was getting at -- a clinical choice of what she would like to treat not that she would rather have HIV as an illness.

I disagree. In the previous paragraph, she talks about HIV "patients" and CFS "patients". In the next paragraph, she talks about the two "illnesses". Then she says if she had to choose between the two "illnesses" , she would rather have HIV. She did not say if she had to choose between the two "patients", she would rather have HIV "patients". If that was her intent, she would have chosen to put this statement after the words comparing "patients".

 

[CFS_for_19_years]

Hold on, I've got Nancy Klimas on the line......just kidding

 

[Leopardtail]

This what I was getting at -- a clinical choice of what she would like to treat not that she would rather have HIV as an illness.

I disagree, she said HAVE not TREAT

 

[Undisclosed]

Here is more of the interview.

http://consults.blogs.nytimes.com/2...-fatigue-syndrome/?_php=true&_type=blogs&_r=0

Links Between H.I.V. and XRMV?

Q.
I found the comparison to H.I.V. (all because it happens to be another retrovirus) to be alarmist, unnecessary and at worst, the kind of sensualist factoid reporting that’s more typical of a tabloid! From what I gather … the link between the two is weak and general at best.

What angers me is that the comparison to H.I.V. is completely out of context; there are many retroviruses that are not known to cause any pathologies at all – comparing it to the one that is most well known and feared is simplistic and quite simply wrong. We should not forget that retroviruses have been common through out human history, and while some do not cause disease at all, most are nowhere near as extreme as H.I.V.

To compare the virus to H.I.V. is to create undue alarm and suffering to people who are already dealing with a difficult disease. Not only is the comparison useless outside its context, it does nothing to provide useful information to the reader.

I ask that you think of the moral consequences of your sloppy comparison — the horror and anguish of those that might have thought that it might be as debilitating as H.I.V., as well as the dread of the thought of potentially passing it on to another person.
David

A.
Dr. Klimas responds:

You make a good point. This is one study, the results needs to be validated, then the next study will look at treatment options. And you are right, some retroviruses are seemingly benign, whereas others are pathogens.

But I hope you are not saying that C.F.S. patients are not as ill as H.I.V. patients. My H.I.V. patients for the most part are hale and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my C.F.S. patients, on the other hand, are terribly ill and unable to work or participate in the care of their families.

I split my clinical time between the two illnesses, and I can tell you if I had to choose between the two illnesses (in 2009) I would rather have H.I.V. But C.F.S., which impacts a million people in the United States alone, has had a small fraction of the research dollars directed towards it.

Despite these limitations, there has been considerable effort to understand the cause and develop effective treatments. The Whittemore Peterson Institute should be congratulated for its outstanding work, performed in a brand new center paid for with private donations, state money and N.I.H. collaboration. Creative research and creative financing!

She splits her time between two clinical illnesses and she would prefer to have HIV because it's treatable as compared to ME is what she is saying. This is based on clinical results which are achieved when people can afford anti-virals. She would not be saying this if anti-virals didn't work on HIV or to patients that didn't have access to anti-virals. I guess she might want to visit a hospice dedicated to full-blown AID's patients who are dying of all the associated stuff that HIV infection brings -- pneumonia, sarcoma's, fungal infections, and other opportunistic infections. At least there is a treatment for HIV where there is none for ME which is why based on clinical results she would prefer to work with HIV patients or even have ME herself. I doubt she would choose HIV that has progressed to full-blown AIDs in the absence of a treatment that works.

I have interpreted her statements differently than to what most seem to think. I do believe she was speaking from a clinical perspective re: the efficacy of anti-virals for HIV vs the lack of research and lack of treatment for ME.

 

[CFS_for_19_years]

I'm sorry for having brought up the original reference to Nancy Klimas; should we get back to the original intent of this thread or do the moderators want to split it in two?.....(sigh).

 

[RYO]

Certainly there are numerous barriers for ME/CFS patients to establish a "therapeutic relationship" with their PCP or specialist. Here is my opinion.

Hopefully, quality ME/CFS research will lead to easier diagnosis and treatment. This will take time.

In the mean time, "it's a mess". Primary care doctors are under increased pressure and stressed out themselves. 15 minutes is short enough to treat a complicated diabetic patient. How about a patient where there are no biologic markers to follow, no objective diagnostic tests, and no evidence based treatment guidelines.

In my experience, all patients want and deserve to heard. Hopefully, you will find someone with basic listening skills and enough experience to know that there are limitations to "medical knowledge". If you are fortunate enough to get to this point, many times ME/CFS patients and their physician will get to a point where both parties consider operating "out of their comfort" zone. (This is of course after numerous illnesses have been carefully ruled out by performing a thorough history and physical exam along with appropriate testing).

All you have to do is read some of the entries on this website to quickly get a sense that ME/CFS is heterogeneous "animal". One supplement/treatment that one patient swears by can cause severe side effects for another.

We need to increase ME/CFS awareness, continue research efforts, and get organized.

Unfortunately our healthcare system can be a challenge to navigate. No "eureka" answers here....

 

[Kati]

Certainly there are numerous barriers for ME/CFS patients to establish a "therapeutic relationship" with their PCP or specialist. Here is my opinion.

Hopefully, quality ME/CFS research will lead to easier diagnosis and treatment. This will take time.

In the mean time, "it's a mess". Primary care doctors are under increased pressure and stressed out themselves. 15 minutes is short enough to treat a complicated diabetic patient. How about a patient where there are no biologic markers to follow, no objective diagnostic tests, and no evidence based treatment guidelines.

In my experience, all patients want and deserve to heard. Hopefully, you will find someone with basic listening skills and enough experience to know that there are limitations to "medical knowledge". If you are fortunate enough to get to this point, many times ME/CFS patients and their physician will get to a point where both parties consider operating "out of their comfort" zone. (This is of course after numerous illnesses have been carefully ruled out by performing a thorough history and physical exam along with appropriate testing).

All you have to do is read some of the entries on this website to quickly get a sense that ME/CFS is heterogeneous "animal". One supplement/treatment that one patient swears by can cause severe side effects for another.

We need to increase ME/CFS awareness, continue research efforts, and get organized.

Unfortunately our healthcare system can be a challenge to navigate. No "eureka" answers here....

The thing is there are specialists (endocrinologists) for complicated diabetic patients, and there are specialized diabetes nurses to do the teaching and follow-up for diabetic patients. then there is homecare, and group sessions.

With ME there is absolutely nowhere to go except patients to self-refer to the very few eperts available in the world (and each of whom has their preferred testing and treatments because there is no standard of care, no approved biomarker, no specific pathogen (though a few are suspected).

Edit to add: every medical specialty is atune to diabetes. The eye doctors. The neurologists. surgeons who perform amputations and by all means any surgery at all, because diabetes presents a risk for each and every surgeries.

And here we have ME. No medical specialty wants to care for us, or even learn. Our most severe patients rarely get to see a doctor, if at all.

How do we change that? It's a million $ question

 

[Valentijn]

In the mean time, "it's a mess". Primary care doctors are under increased pressure and stressed out themselves. 15 minutes is short enough to treat a complicated diabetic patient. How about a patient where there are no biologic markers to follow, no objective diagnostic tests, and no evidence based treatment guidelines.

My fiance came down with Type I diabetes a couple years ago, and has never seen the GP for it or related problems. He has an internist he sees twice a year for regular checkups, and regular diabetes-related eye exams as well. If he had any complications, it would be the internist who would handle it or make referrals.

We get 10 minute GP appointments in the Netherlands, though the doctors are usually running behind and will try to make it 5 minutes. We badly need specialists here, but the best we can get is a referral to a fatigue clinic which won't address symptoms and will only deal with us for 12 months before sending us back to the GP for management.

So it's 12 months of mistreatment via CBT and GET, then a lifetime of trying to get symptomatic investigation and treatment from a GP who has no power to prescribe much of anything and no time to even discuss your symptoms. It's a huge mess, and GPs are completely unequipped to deal with it.

That said, we do have objective diagnostic tests such as the CPET, and will also often get abnormal results regarding infections and immune function.

 

[Kati]

My fiance came down with Type I diabetes a couple years ago, and has never seen the GP for it or related problems. He has an internist he sees twice a year for regular checkups, and regular diabetes-related eye exams as well. If he had any complications, it would be the internist who would handle it or make referrals.

We get 10 minute appointments in the Netherlands, though the doctors are usually running behind and will try to make it 5 minutes. We badly need specialists here, but the best we can get is a referral to a fatigue clinic which won't address symptoms and will only deal with us for 12 months before sending us back to the GP for management.

So it's 12 months of mistreatment via CBT and GET, then a lifetime of trying to get symptomatic investigation and treatment from a GP who has no power to prescribe much of anything and no time to even discuss your symptoms. It's a huge mess, and GPs are completely unequipped to deal with it.

That said, we do have objective diagnostic tests such as the CPET, and will also often get abnormal results regarding infections and immune function.

Here in Canada physicians do not even know what NK cell function is. the last time they heard about NK cell was in early med school. Testing the immune system ends up doing a CBC and looking at the white blood count differential. CD-4 and CD-8 counts are reserved for HIV patients, and if you have HIV you have your own specialist. It is absolutely unbelievable. i can't think about it too much because it is so upsetting.

 

[MeSci]

Until there is at least a one month rotation during medical school in all medical schools, and in residency training (primary care) for MECFSFIBRO, this attitude of physicians will not change.

How would you pronounce MECFSFIBRO?

 

[MeSci]

Certainly there are numerous barriers for ME/CFS patients to establish a "therapeutic relationship" with their PCP or specialist. Here is my opinion.

Hopefully, quality ME/CFS research will lead to easier diagnosis and treatment. This will take time.

In the mean time, "it's a mess". Primary care doctors are under increased pressure and stressed out themselves. 15 minutes is short enough to treat a complicated diabetic patient. How about a patient where there are no biologic markers to follow, no objective diagnostic tests, and no evidence based treatment guidelines.

In my experience, all patients want and deserve to heard. Hopefully, you will find someone with basic listening skills and enough experience to know that there are limitations to "medical knowledge". If you are fortunate enough to get to this point, many times ME/CFS patients and their physician will get to a point where both parties consider operating "out of their comfort" zone. (This is of course after numerous illnesses have been carefully ruled out by performing a thorough history and physical exam along with appropriate testing).

All you have to do is read some of the entries on this website to quickly get a sense that ME/CFS is heterogeneous "animal". One supplement/treatment that one patient swears by can cause severe side effects for another.

We need to increase ME/CFS awareness, continue research efforts, and get organized.

Unfortunately our healthcare system can be a challenge to navigate. No "eureka" answers here....

Thanks to the depth of knowledge that the letter-writing doctor concedes that chronically-ill patients often have, for some years now, on the increasingly-rare occasions I go to a doctor, it is to try to get a prescription for something that I know is likely to help me. It is sometimes the only way I can get it - the doctor is the 'gatekeeper'. But sometimes I can't get it, and sometimes I have to jump through an exhausting and time-consuming range of hoops - and I am self-employed, so time and energy used elsewhere equal money lost from my already-meagre income) to get it (or not get it).

Are doctors not taught how to cope with illnesses that are poorly understood, and expert patients? Chronic illness now represents the majority of the burden on healthcare now, doesn't it? And patients now have a right to an equal relationship with doctors. In the UK this is enshrined in the NHS constitution. So why are sick, often-poor people being taught/expected to try to understand healthy, well-paid doctors instead of vice versa? Isn't it enough to suffer the illness without this extra burden?

 

[Ecoclimber]

I had a visit with my doctor recently. A few months ago, I discovered that he didn't consider CFS to be a serious illness. (ME just doesn't exist for him.) During this visit, I handed him a stack of a couple of dozen of the best papers over the last 30 years on ME/CFS from mainstream, peer reviewed medical journals. The authors included many of the best of ME community - Cheney, Peterson, Klimas, Komaroff, Bell, Jason, Chia, etc., as well as many well-known papers from lesser-known authors. Smiling, my doctor said, "I'm a voracious reader!" and took the papers.

He didn't read them, of course.

When I next saw him, he told me he had run them by a statistician, who had told him that the results of each and every one of the papers was "statistically insignificant". Therefore, their conclusions were all meaningless. When I started to protest, he started lecturing me on statistics, until I said, "I've taken statistics." And of course, if you know statistics, you know that even if the absurd premise that each paper's results were statistically insignificant were true, the odds that one or more of the papers were correct would still be many orders of magnitude greater than the odds that the particle found by physicists two years ago was the Higgs boson.

It is much more likely, of course, that the conclusions of all or nearly all of those papers was correct.

Then my doctor showed me his sources. They come from a site named UpToDate. It turns out that many doctors use this site for their "research". Some doctors, such as mine, will believe this site over any published journal. The site claims:

UpToDate® is the premier evidence-based clinical decision support resource, trusted worldwide by healthcare practitioners to help them make the right decisions at the point of care. It is proven to change the way clinicians practice medicine, and is the only resource of its kind associated with improved outcomes.​

As for the "CFS" content, I think it can be summarized as, "The 1990 CFS for Dummies Guide (Abridged Edition)".

Now to see all the of the articles, you have to subscribe to the site; a "patient" can do so for $20 for one week. Unfortunately, this comes with a license agreement that the results can't be posted anywhere. The results are very interesting, if you want to know what many doctors go by. However, there is a certain amount of content that can be seen by anyone without having to subscribe, so I thought I'd post links to it here so people can see why many doctors are stuck in 1990.

Here's the first article: Clinical features and diagnosis of chronic fatigue syndrome

The full text contains the 1994 Fukuda definition. However, it does not include the entire definition. Specifically, it leaves out the section on exclusionary cases, including all the various types of mental illness that preclude a diagnosis of CFS.

Fortunately, the list of 88 references is free: Don't read right after eating!

The content of many of these papers is fascinating, for those who have the stomach.

There are the older articles, which contain content that has been disproven many times over. Then there’s a whole group of articles that are saying, “We have shown that CFS does not have this or that characteristic,” when no one had claimed that it does. Many studies refer to “CFS patients” without defining what they mean by CFS. There are six papers with Stephen Straus as co-author, two by Peter Manu, and one by Simon Wessely. (We'll see more of Wessely later.) Some papers make no attempt to disguise their bias, such as "From myalgic encephalitis to yuppie flu: A history of chronic fatigue syndromes," which was published in 1992.

And yet there are a number of papers that are perfectly reasonable, such as Chronic fatigue syndrome: clinical condition associated with immune activation, which was published in the Lancet(!) in1991.

Next paper: Treatment of chronic fatigue syndrome

They don't call this Web site UpToDate for nothing! Warning: The 44 references here are worse than the last batch.

This time, Straus has just two papers, but Wessely has four. Peter White also has four. Combine this with the fact that four of these articles were published in the Lancet, five in the BMJ, three in QJM (a British journal), and one in the British Journal of Psychiatry; of these thirteen, four overlap with the articles by the named authors.

So 19 of the 44 references (43%) in the article "Treatment of Chronic Fatigue Syndrome" were written by British doctors and/or published in British journals. It is fair to assume that the Oxford definition was used for this 43%. So we have such titles as Sharpe M, Wessely S. Putting the rest cure to rest--again. BMJ 1998.

I had mentioned what I called "the infamous PACE trial" to my doctor; he said he had never heard of it. But there it is in Reference #4, helping to guide his treatment of me.

So if any Americans thought they were safe in the USA, far from Simon Wessely's grip, think again.

Finally, here's one of the two Patient Information articles; this one is free and includes the whole text: Patient information: Chronic fatigue syndrome (Beyond the Basics)

Aside from the fact that this article is 20 years out of date and inaccurate, it's not too bad.

So who created these biased, out-of-date, and inaccurate articles that so many doctors are using? Well, the author's name is at the top of every article; it's Stephen J Gluckman, MD. He is Professor of Medicine at the University of Pennsylvania School of Medicine. Is he an internationally recognized expert on CFS? No. Is he a nationally recognized expert on CFS? No. Well, let’s take a closer look on his Web page at the University of Pennsylvania Health System to see who he is. He lists three specialties; CFS is not among them. He lists five areas of clinical expertise; CFS is not among them. What about publications? Maybe he’s done some major research. Well, he lists ten “Selected Publications”. Only two are in peer-reviewed medical journals. And the only entries he has for CFS are an entry in Conn’s Current Therapy, plus his articles in UpToDate.

Well, what kind of a doctor is he? Maybe he was picked because he was such an excellent doctor. So let’s check out the patient review sites for doctors.

On the HealthGrades Web site, he’s rated 2.5 out of five – a very low score. He’s rated well below average in every category except wait time. (Apparently, patients aren’t lining up to see him.) I’ve recently checked out all the internists and GPs on this site for my city (yes, all of them, and that’s well over 200), and I recall seeing only one other doctor rated this low. So he’s basically in the lowest 1% of all doctors.

Let’s go to another ratings site. This one gives him a 3.3 out of 5, which the site rates “fair”. This site also has patient comments. Positive patient reviews have to be viewed skeptically, especially when there are a number of extremely negative reviews such as in this case; the positive reviews can be fakes. So let’s look at what a negative review says:

Suggested that my complaints could be due to anxiety, which I currently do not have. Had he asked more questions about my physical and psychiatric states, he might have figured that out. Just looked at my normal test results and concluded my physical complaints must not be due to real (physical) causes.​

Having come this far, I don't think this is unexpected. OK, let’s look at at least one positive review – this person gives him a 5 out of 5.

Dr. Gluckman is a very knowledgable doctor. He is the kind of doctor that tells you if your complains are real…​

Oops. We see why this doctor likes the British school.

So this doctor is a real, dyed-in-the-wool, “it’s all in your head” type of guy. He does not even claim any experience or expertise in CFS, and yet he is influencing the view and treatment decisions of doctors all over the U.S.

It seems to me that it would be much to our benefit to educate the folks at UpToDate about what the current state of ME/CFS really is - especially since so many doctors listen to them, and some, like mine, will listen to them even despite contrary evidence in dozens of professional journals. Fortunately, UpToDate has an email address where people can comment on their content. It's editorial@uptodate.com. I would urge as many people as possible to write to this address and let them know that UpToDate is just, well, out of date here, as well as inaccurate. It would very good to point out the bias and lack of expertise of the author of these articles as well. Pointing them to valid sources of information such as Osler's Web and Chronic Fatigue Syndrome: A Treatment Guide, 2nd Edition would be helpful as well. Also, it would be good to point out to them that publishing out-of-date, inaccurate information that relies heavily on the British model, which refers to a different disease, could put both them and their audience at substantial legal liability for any damages caused by physicians following their guidance, including damages caused by misdiagnosis (the incomplete Fukuda definition) and by omission of well-known effective treatments, as well as the recommendation of treatments known to be harmful.

If that fails, there are various email addresses and phone numbers on their Contact Us page, and we could try going up the corporate ladder.

UPTODATE.COM is owned by a global conglomerate of world wide coporations that have their tenacles into all areas of law, tax, accounting, publishing, health information, finance. There parent company is Wolters Kluwer
annual rvenues is 3.6 billion. The executive board on the healthcare of uptodate.com consists of business executives in law, finance, CPA, Information technology, health.

Apparently, they pay hacks to write articles by medical professionals who have no knowledge or experience of ME/CFS nor have they treated one patients with ME/CFS. Once again they are shaping medical opinion for the medical profession even though it violates their own marketing and operational statements and contract concerning their core values

They have unlimited resources to lobby Congress, donate to special pac and fund relection campaigns. They are shaping the message for both the medical profession and the patient with this despicable, inaccurate, unsubstatianted psychobablists jargon dusted off the backs of Freudian with his crooked data and continues today with the crooked data of PACE. Can one trust or give credibility to a medical site that is so derelict in duty by their chief medical editor failing to gather all of the proper relevant research material and whose credentials are not even in the field of study for that particular disease.

They also have enormous funds and capability to shape the medical policy, the position papers, research and treatment protocol for most illnesses through skillful neglect or ignoring critical medical research papers and bias selection of materials to review, that focus on a EBM or psychosomatic model. They have enormous power and are impossible to fight on an equal footing. They control the message. Unfortuanley, the ME/CFS patient do not have the resources to overcome this organization or similar ones like them.