Bateman Horne Center Clinical Guide 2025

[Hutan]

I'm aware that the Bateman Horne Clinical Guide is very influential in the ME/CFS community, with many people believing it presents the best evidence for care of people with MECFS.

Bateman Horne Center Clinical Care Guide First Edition 2025

We have had some discussions about it on the forum, but I think, given its influence, it warrants some more scrutiny.

Spoiler: Authors

Contributing Authors

Melanie Hoppers, MD – Internal Medicine, Pediatrics

Brayden Yellman, MD – Internal Medicine, Rheumatology

Lucinda Bateman, MD – Internal Medicine

Zeest Khan, MD – Anesthesiology

Michelle Haddad, PhD – Neuropsychology

Paige Zuckerman, M.Ed, CMHC – Counseling Psychology, Disability & Medical Trauma

Jennifer Bell, FNP-C – Family Medicine

Clayton Powers, DPT – Physical Therapy

Amy Mooney, MS, OTR/L – Occupational Therapy

Jaime Booz, M.S., CCC-SLP – Speech Language Pathology

Tahlia Ruschioni, BS – Director of Medical Education

 

[Hutan]

Brain retraining recommendations
@The ME Inquiry Report and others conducted a campaign to have content in the guide promoting brain retraining removed - see this thread
Unevidenced recommendations of brain retraining in Bateman Horne Center's Clinical Guide for ME and Long Covid

Fortunately the feedback from the community reset din the BHC removing those recommendations.

 

[Hutan]

Spinal surgery recommendations
Last year @Grigor wrote an excellent letter questioning, among other things things, the guide's recommendations about spinal surgery.

Dear x,

Thank you for your response.

You asked whether the text should be reworded to emphasize that surgery is a last resort, but that’s not the only concern I have.

There is no mention in the guide of the significant harm these surgeries can cause. First, the procedure permanently fixes the neck—there is no way back. Moreover, for many patients, the surgery either has no effect or even worsens their condition. When improvements do occur, they are often incremental at best.

We also lack reliable methods to predict who might benefit. While preoperative traction might offer some guidance, it remains an uncertain predictor.

Importantly, there is no evidence that these surgeries improve or resolve ME symptoms. Fusion surgery has never been properly studied in the context of ME. Yes, some patients report improvements, but there's no proof that the surgery itself is the reason.
Other factors—such as the use of anti-inflammatory drugs like dexamethasone, which some surgeons administer after surgery—could also explain these improvements.

Claiming improvement is due to the fusion simply because it followed the procedure is a classic case of post hoc, ergo propter hoc. Dr. Yellman seems to imply this causality in several instances, which I find both disappointing and concerning.

The guide states:

“Structural instabilities in the spine can lead to neurological dysfunction, dysautonomia, pain, and worsening PEM.”

But where is the evidence that spinal issues worsen PEM? Has this been properly studied? You refer to the work of Gilete, among others, yet he has been publicly criticized in Dutch media for not publishing outcome data, charging extremely high fees, and in some cases causing harm to patients. In one of the videos referenced, he merely presents a single case without deeper analysis.

archive.is/ifU5A

If you do feel you need to include a section about biomechanical considerations, it must clearly acknowledge:

• That there is no evidence linking these surgeries to ME symptom improvement

• That reported improvements are often minor—or entirely absent

• That the procedures can cause serious and lasting harm

This letter, in my view, is far more objective and constructive than what your current guide offers:

drive.google.com/file/d/1J86TnhvHRA29zlihgG9jiGAlTAQ_nFU-/view?usp=drivesdk

To be frank, I find the guide deeply concerning—especially the sections on brain retraining and CCI, but also many others that present unverified claims as fact. It comes across as unscientific, and I would be very uncomfortable sharing this with my doctor. In fact, I fear many clinicians would dismiss it outright, which ultimately does a disservice to patients.

I strongly urge you to revise the guide to be more nuanced, more critical, and clearer about the lack of evidence and the potential for iatrogenic harm. As it stands, the content is misleading, potentially harmful, and deeply disappointing.

I sincerely hope you'll take steps to improve it. As it is now I'm definitely not recommending it to anyone.

The problematic content is still there. It starts:

This chapter will cover anatomical complications such as cranio-cervical instability (CCI), atlantoaxial instability (AAI), tethered cord syndrome, and venous congestion disorders in ME/CFS and Long COVID.

Clinical Disclaimer:
The anatomical and biomechanical considerations outlined in this chapter—including craniocervical instability (CCI), atlantoaxial instability (AAI), tethered cord syndrome, and venous congestion syndromes—should be considered only after a comprehensive evaluation and trial of less invasive, first-line interventions. These diagnoses are complex and require highly specialized imaging, clinical interpretation, and multidisciplinary expertise to assess accurately.

It is concerning that the BHC is promoting these ideas.

 

[Hutan]

Chapter 1: Navigating Uncertainty

Set clear expectations. Patients and providers must establish realistic treatment goals, acknowledge that progress may be slow, and agree on boundaries—clinicians should not feel pressured to prescribe unproven treatments, and patients should not be criticized for declining interventions due to cost or side effects.

I think that paragraph is indicative of the content in this chapter. There is a lot of useful things said. But, underlying it is a profound belief that, although 'progress may be slow' there will be progress.

2.Support goes beyond prescriptions. Helping patients secure workplace/school/home accommodations, disability resources, and access to interdisciplinary care is just as crucial as medication-based management.

Here's another example - great stuff acknowledging the support clinicians can provide, and yet still there is this belief that medication will be just as helpful.

Guide patients toward reputable resources. Patients inevitably turn to online sources, where accurate information coexists with misinformation. Clinicians should recommend trusted organizations to empower informed decision-making.

This is deeply ironic given some of the nonsense in this clinical guide. 'Trusted organisations' that deserve that trust are few and far between.

 

[Jonathan Edwards]

I agree that this Guide needs more scrutiny.
There was a presentation on it at the ForwardME AGM by the BHC manager. I raised the issue of how problematic it was in a later message.

It is clearly regarded as 'on side' by many patients and advocates but typifies the make-believe 'support' that is as bad as anything BPS in many ways.
The inclusion of pseudoscience co-morbidities and treatment approaches is particularly bad.

 

[Hutan]

Chapter 2: The basics of Long Covid, ME/CFS and co-morbidities

Again, a mixture of useful information and things that go well beyond evidence. It was surprising to see the chapter lead with Long covid and then only move on to a definition of ME/CFS.

There's acknowledgement that some people with Long Covid meet ME/CFS criteria. The ME/CFS criteria mentioned are the NAM and CCC ones, with reasonable descriptions of the symptoms. I think it was a missed opportunity to explain that Long covid is a lot of things, instead a NASEM definition that says that 'Long covid is an infection-associated chronic condition' is presented. I think it was also a missed opportunity to note that ME/CFS seems to be triggered by a wide range of infectious diseases. For example, EBV is not mentioned. And that sometimes no triggering infectious disease can be identified.

2. Orthostatic intolerance (OI) a worsening of symptoms upon assuming and maintaining upright posture. Reduced cerebral arterial blood flow has been consistently observed, but this testing is not readily available clinically. Note: while heart rate and blood pressure changes may support a diagnosis of OI, it's not required.

Symptoms including lightheadedness, fainting, increased fatigue, cognitive worsening, headaches or nausea are worsened while upright ~either standing or sitting-up. Symptoms are improved ~though not necessarily fully resolved with lying down.
Orthostatic intolerance is often the most bothersome and functionally limiting manifestation of ME/CFS especially among adolescents

The OI section is a representative example. We could argue about whether 'reduced cerebral arterial blood flow has been consistently observed' but most of it is fine. There are some good things such as acknowledging that it is the worsening of symptoms with an upright posture that equals OI - there do not need to be measurable abnormalities in heart rate and blood pressure. I'm surprised though that increases in heart rate with sustained right posture aren't mentioned as often being reported.

Poor NK cell cytotoxicity correlates with severity

I don't think there is good evidence for this.

Excessive sweating

Or this?

Unfortunately, Section 2.4, a list of 'Co-morbid conditions', is a ragbag of conditions. Some are just common ME/CFS symptoms e.g. sensory hypersensitivities. Others are disputed entities e.g. MCAS. Others are actual diseases but we don't have evidence of them being more common in ME/CFS e.g. endometriosis, premenstrual syndrome, celiac disease. Some of the items are essentially wrong and unhelpful e.g. 'Hypothalamus-Pituitary-Adrenal Axis dysregulation (low normal or flattened cortisol curve)'

2.6 Management Strategy Overview
There's quite a list of unevidenced interventions there, various diets, herbals and supplements, electrolytes...

 

[Hutan]

It's such a shame. There is good material here, material that we want doctors to read, for example most of Chapter 14 about Severe and Very Severe Considerations.

Severe and very severe ME/CFS represents one of the most profound states of disability found in medicine. These
patients are often completely housebound or bedbound, often unable to tolerate light, sound, movement, or
touch.₄₀,₆₄,₁₁₉ Many require assistance with basic activities of daily living (ADLs) such as toileting, feeding, or even
turning over in bed. Some rely on tube feeding or are confined to a dark, quiet room, completely isolated from the
world.₆₄,₁₁₉

Despite the extreme nature of their debility, patients with severe and very severe ME/CFS remain largely invisible to
the medical system. They are often neglected, mischaracterized, or even disbelieved—leading to catastrophic gaps in
care.₆₄,₉₀,₁₁₉ Yet these patients still deserve—and urgently require—compassionate, informed medical support.

Providing care for this population demands a paradigm shift: a commitment to honor their experience, recognize the
distinct biological basis of their illness, and adapt to their profound needs.₉₀,₁₁₉ Effective care requires building a
collaborative network among primary care providers, home health teams, and family or caregiver supports. Together,
these partnerships can help overcome the systemic barriers that have long left these patients unseen, ensuring they
receive the respectful, accessible, and individualized care they deserve.₉₀,₁₁₉

The ME/CFS community needs a reputable clinical guide. This isn't it. I agree with @Grigor's assessment, we can't safely share any of it, because the good material is tainted by the nonsense.

It comes across as unscientific, and I would be very uncomfortable sharing this with my doctor. In fact, I fear many clinicians would dismiss it outright, which ultimately does a disservice to patients.

I strongly urge you to revise the guide to be more nuanced, more critical, and clearer about the lack of evidence and the potential for iatrogenic harm. As it stands, the content is misleading, potentially harmful, and deeply disappointing.

This guide is going to set patients up for harmful medical interactions when their expectations are so far away from reasonable medical practice.

The inclusion of pseudoscience co-morbidities and treatment approaches is particularly bad.

Yes.

 

[Jonathan Edwards]

There is good material here,

There is, but always used to justify services. Maybe patients require compassionate informed medical support but what medical support is being implied? In general the support needed is just care, or access to nutrition.

Does effective care involve 'building a collaborative network" or does it simply involve getting health professionals already in place to view people with ME/CFS as just as deserving of care as people with other diseases? The biggest problem I see in the UK is the misguided call for separate 'ME/CFS services' when all that is needed is access to the same services as everyone else. As long as services are separate they will be based on one bogus theory or another.

That is already evident in the 'distinct biological basis of the illness" comment. All illness is biological. Yes, we think ME/CFS is distinct and we have genetic clues but we don't have a specific basis to recognise yet.

 

[Hutan]

Effective care requires building a collaborative network among primary care providers, home health teams, and family or caregiver supports.

I took that to mean GPs, and district nurses and the support workers who call in to help with personal cares and the patient's family, all communicating well and aware of what is needed. Yes, that collaboration is what we would want to happen for anyone, but there are some requirements that well-meaning people may not be aware of e.g. accommodation of light and sound sensitivities.

There is, but always used to justify services.

You do have a point. This clinical guide is written by a centre that is presumably a profit-making entity. Of course the guide is going to suggest that the clinic has some special insights that justify the major effort to get to the clinic and pay what is presumably significant fees.

 

[Sean]

Excessive sweating​

I think there might be something to this one. Heard this anecdotally a few times over the years, and experienced it myself. Specifically, earlier onset, wider distribution, and greater volume. Maybe not extreme hyperhydrosis, but a definite change.

But I agree there is not good evidence for it. Though that well may be because nobody has looked properly. As with so much about ME/CFS.

Might be interesting to test sweat content too, and tears.

 

[Jonathan Edwards]

I took that to mean GPs, and district nurses and the support workers who call in to help with personal cares and the patient's family, all communicating well and aware of what is needed.

It sounds like it but these people are already there so what is 'building a network'?
I am pretty sure it is indoctrinating people with care policies that cast the referral centre in a glowing light. And what is this 'collaborative' if not referring to some other professional for maybe a bit of mindfulness therapy or acupuncture or...
I may be over-cynical but wherever I look I see ways to create jobs for the girls and boys rather than tackling the real problem - that ME/CFS is seen as outside the 'real disease' domain.

 

[Amw66]

Excessive sweating​

I think there might be something to this one. Heard this anecdotally a few times over the years, and experienced it myself. Specifically, earlier onset, wider distribution, and greater volume. Maybe not extreme hyperhydrosis, but a definite change.

But I agree there is not good evidence for it. Though that well may be because nobody has looked properly. As with so much about ME/CFS.

Might be interesting to test sweat content too, and tears.

and not sweating at all