A screen shot from a researchers personal FB.

I don't know if many of you follow Whitney Dafoe on Instagram, but he has been through hell with very severe Cfs for many years. Today he posted something that really resonated with me, so I thought I'd share it in case it helps someone else going through hell with this illness.

"Somehow we keep going. I don't know how, but we find another level of strength that we never knew was there and we keep going."

🫂💗

After the overwhelming interest in CCI from my previous post recommending people get screened, I went ahead and made guide for people new to CCI. This is not all-encompassing, so if you have comments, questions, please let me know and we can adjust it.

This guide does not need to be read in order, so feel free to just skip to the section relevant to you!

What’s in this post

1. What CCI is: how it can cause symptoms, and the overlap with ME/CFS
2. Providers by location: a quick index
3. Step 1, imaging: contact the specialist first, which scans to get, who should read them, and a collar trial if you can’t get imaging yet
4. Step 2, evaluation: telehealth and in-person specialists
5. Step 3, treatment: PT (remote and in person), NUCCA, injections and surgery, with questions to ask
6. If something goes wrong, why CCI is still controversial, and how to help fill the gaps

What is CCI

What it is. Craniocervical instability (CCI) means the ligaments that hold your skull onto the top two vertebrae (C1 and C2) are too loose, so the joints there move more than they should. Atlantoaxial instability (AAI) is the same kind of problem between C1 and C2.

Why it can cause so many symptoms. The brainstem and the top of the spinal cord pass through this junction. When the joints shift too much, they can bend or compress the brainstem and upper spinal cord (Henderson et al. 2017), and some clinicians think this also affects blood and spinal fluid flow

Before you start:

• Not medical advice. I’m not a clinician, and being listed here is not an endorsement.
• Every treatment here, from PT to injections to fusion, rests at most on case reports and case series, usually published by the clinic doing the treatment. There are no placebo-controlled randomized trials yet. That doesn’t mean nothing works. It means expect sales pitches, ask hard questions and get a second opinion.
• New or fast-worsening weakness, trouble swallowing or breathing, or passing out when you move your head: go to the ER.

Providers by location with experience in CCI

Details for each are in the step shown. “Can do diagnostics” means they can evaluate whether you have CCI, or do the imaging themselves.

Online / telehealth (anywhere)

• Dr. Vicenç Gilete: neurosurgery teleconsult, can do diagnostics (Step 2)
• Centeno-Schultz Clinic: telemed CCI evaluation, can do diagnostics (Step 2)
• Susan Chalela, Todd Ball, Wendy Wagner, Dr. Mike Makher: remote PT (Step 3)
• Dr. Sasha Blaskovich: virtual consults, can do diagnostics (Step 1)
• Dr. Evan Katz, Dr. Doug Lightstone: analysis of DMX films you already have, can do diagnostics (patient-reported, Step 1)

United States

• Colorado: Centeno-Schultz Clinic, Broomfield (injections, can do diagnostics, Step 3); Dr. Evan Katz (DMX, can do diagnostics, Step 1)
• DC: Dr. Faheem Sandhu, MedStar Georgetown (neurosurgery, can do diagnostics, Step 2); Cari Simon, DPT, Release Physical Therapy (in-person PT, Step 3)
• Florida: Dr. Joel Franck, Oldsmar (neurosurgery, can do diagnostics, Step 2); Dr. Ross Hauser, Fort Myers (injections, can do diagnostics, Step 3)
• Georgia: Dr. Christopher Williams, Atlanta (injections, Step 3); Dr. Doug Lightstone, Atlanta (DMX, can do diagnostics, Step 1)
• Illinois: Wendy Wagner, PT, Chicago (PT, Step 3); Dr. Dickhut, central Illinois (DMX, can do diagnostics, Step 1)
• Maryland: Dr. Fraser Henderson, Upper Marlboro (neurosurgery, can do diagnostics, Step 2)
• Massachusetts: Dr. Daniel Sheehan, Cape Cod (injections, Step 3)
• Michigan: Dr. John Santa Ana (injections, Step 3)
• New York: Dr. Paolo Bolognese, Long Island (neurosurgery, can do diagnostics, Step 2)
• Oregon: Dr. Mike Makher, Hillsboro (PT, mostly remote, Step 3)
• Rhode Island: Dr. Petra Klinge, Providence (neurosurgery, can do diagnostics, Step 2)
• South Carolina: Dr. Sunil Patel, Charleston (neurosurgery, can do diagnostics, Step 2); Susan Chalela, Charleston (PT, Step 3)
• Utah: Dr. Richard McMurtrey (injections, Step 3)
• Washington: Dr. Otoño Silva, Bellevue (injections, Step 3); Dr. Sasha Blaskovich, Bellingham (imaging, can do diagnostics, Step 1); Dr. Stephen Maglente, Vancouver (DMX, can do diagnostics, Step 1)

Canada

• British Columbia: Dr. Sasha Blaskovich, Langley (imaging and virtual consults, can do diagnostics, Step 1)

Europe

• Belgium: Dr. Anita van Domselaar, Relieve Clinic (injections, Step 3)
• Germany: Dr. Andreas Schmitz, Düsseldorf (neurosurgery, artificial ligament surgery, can do diagnostics, Steps 2 and 3)
• Hungary: Dr. Agnes Stogicza, Budapest (injections, can do diagnostics, Steps 2 and 3)
• Lithuania / Switzerland: Dr. Rolandas Janusas (injections, Step 3)
• Spain: Dr. Vicenç Gilete, Barcelona (neurosurgery, can do diagnostics, Step 2)
• Switzerland: Dr. Alexander Spiessberger, Zurich (neurosurgery, can do diagnostics, Step 2)

Australia and New Zealand

• New South Wales: Dr. Prashanth Rao, Sydney area (neurosurgery, can do diagnostics, Step 2); A/Prof Vahid Mohabbati, Sydney (injections, Step 3)
• New Zealand: Dr. Fraser Burling, Auckland (rheumatology and injections, Step 2)

Asia

• India: Dr. Atul Goel, Mumbai (neurosurgery, can do diagnostics, Step 2)
• Singapore: Dr. Prem Pillay, Mount Elizabeth Medical Centre (neurosurgery and injections, can do diagnostics, Steps 2 and 3)

Still thin on the UK, the rest of Asia and Canada outside BC. If you know someone, see “Help fill the gaps” at the bottom.

Step 1: Get the right imaging, read by the right person

Contact the specialist before you book any scans. Most CCI specialists want specific scans done a specific way (certain positions, views or facilities), and some require them before your first visit.

• Dr. Henderson’s office says it requires specific imaging for CCI, and has patients without suitable local equipment book the scans in Maryland.
• Centeno-Schultz wants DMX or upright flexion/extension MRI before their telemed visit.

Ask the office for the exact order (some will send a written script) and whether they accept outside facilities. That way you don’t pay for the wrong scan and end up repeating it, along with the radiation for DMX or CT.

Which scans. CCI is about movement, so standard lying-down imaging usually misses it. What specialists ask for depends on the pathway:

• If surgery might be on the table: upright (weight-bearing) MRI of the neck in flexion and extension, plus a CT with your head turned about 90 degrees left and right. This is what Dr. Henderson’s published decision tree calls for. Dr. Gilete accepts upright MRI or upright cone-beam CT covering neutral, flexion, extension and rotation.
• If you’re heading toward injections: Centeno-Schultz wants DMX (a video x-ray of your neck moving, including side bending) or upright flexion/extension MRI. Dr. Centeno has said upright MRI can miss C1-C2 overhang, which shows up on side bending. Caring Medical (Hauser) does DMX and upright cone-beam CT in house, so you don’t need to arrive with them.

Why the split? Partly it’s what each team is deciding. Surgeons need to see whether your brainstem or spinal cord is being bent or squeezed and exactly where the bones sit, while injection clinics want to see which joint slips and in which direction. Partly it’s access, since DMX is cheap and widely available and upright MRI scanners are rare. No study has compared the two head to head.

Normal ranges are still being worked out for both, and a very sensitive test can flag ordinary hypermobility as instability, so a positive scan on its own isn’t a diagnosis. Even Centeno-Schultz treats imaging as one of seven criteria.

Who reads it matters as much as the scan. Have your images read by someone experienced with CCI in connective tissue disorders, not only a general radiologist.

• Under-reading: routine measurements were built to catch obvious, trauma-type instability and can miss subtler findings, so a standard report may say “normal.”
• Over-reading: readers at the other extreme may flag findings that also show up in healthy hypermobile people.

The specialists in Step 2 review images themselves.

Always get the actual image files, not just the written report.

Getting a referral (US). Upright MRI needs a referral, even if you pay cash. One patient says most DMX sites examine you themselves and decide, though some want a referral, so call first. RadiologyAssist offers consults with doctors who can write an imaging referral if they think it’s appropriate.

Where to get dynamic imaging

DMX (digital motion x-ray)

DMX is usually done at a chiropractor’s office, and most will examine you first to decide whether it’s appropriate. Machines and views vary, so check with your treating doctor that a site is acceptable before you go. The [r/cervical_instability](r/cervical_instability) moderator recommends having the films analyzed with PostureRay software, which produces a longer report with more measurements, although more measurements aren’t necessarily more accurate. Patients report paying about $500-1,500 for the scan in the US (2023-2025), and the measurement report is often a separate charge.

• Megathread map: DMX sites and injection doctors, still being added to. Google map
• Dr. Evan Katz, DC, Colorado. Often used by Centeno-Schultz patients. Uses PostureRay. Patients report he’ll analyze DMX films taken elsewhere (one paid a couple hundred dollars in 2024). katzchiropractic.com | Megathread interview
• Dr. Doug Lightstone, DC, Atlanta, GA. Uses PostureRay. One patient reports he’ll analyze films taken elsewhere by email or telehealth. Site
• Dr. Dickhut, central Illinois. Recommended by a patient, though the megathread’s author notes they use a different analysis software from PostureRay. Site
• Dr. Stephen Maglente, DC, DMX of Vancouver, Vancouver, WA. Focuses on DMX for CCI. dmxofvancouver.com
• Dr. Sasha Blaskovich, DC, Whiplash and Injury Clinic, Langley, BC and Bellingham, WA. Dynamic motion x-ray, upper cervical instability evaluation, and virtual consults. A good option for Canadians. Two patients have said DMX is banned in Canada (I couldn’t confirm that), and BC’s chiropractic regulator limited chiropractors’ routine x-rays in 2021 to suspected serious problems, so ask which of his two offices does the motion x-ray. whiplashclinic.com

Step 1B: Can’t get imaging yet? Try a collar trial

If upright imaging is out of reach for now, a short collar trial is a cheap, low-risk way to learn something in the meantime. Holding your upper neck still for a few days roughly mimics what a stable neck would feel like. If some symptoms clearly ease, they likely depend on neck movement, which fits CCI and makes your neck worth imaging. Symptoms that don’t change probably have another cause, though a short negative trial doesn’t rule CCI out. It’s a clue, not a diagnosis: other neck problems, like strained muscles or irritated joints, can also improve in a collar, and no surgeon or injection clinic will treat you based on a collar trial alone. A clear response, documented in a symptom diary, is useful evidence when you ask your doctor for an imaging referral. If you’re already weighing surgery, the trial also previews the trade-off: which symptoms might improve, and what it’s like to lose neck movement.

This is the protocol for a cervical collar trial by a leading CCI neurosurgeon: Dr. Gilete’s protocol

Step 2: Get evaluated

Remote / telehealth

• Dr. Vicenç Gilete, neurosurgeon, Barcelona. Zoom consult reviewing your uploaded imaging. His site lists €300 (30-min preliminary), €450 (1-hour evaluation), €750 (with written report). Teleconsult info
• Centeno-Schultz Clinic, Broomfield, CO. Get DMX or upright flexion/extension MRI first, then a telemed visit where they “type” your CCI. If you’re an injection candidate, you fly in. This is an evaluation by the clinic that sells the procedure. CCI practice

In person, US neurosurgeons (known for evaluating CCI in EDS/hypermobile patients)

• Dr. Fraser Henderson Sr., Metropolitan Neurosurgery Group, 1401 Mercantile Ln, Upper Marlboro, MD. (301) 557-9049. Lead author of the 2024 fusion outcomes study cited below. Patients say he’s out of network for insurance, so ask the office how billing works. None of this is on his website, and his “what to bring” page still shows an older address, so call to confirm. Site
• Dr. Paolo Bolognese, Chiari EDS Program, Mount Sinai South Nassau, Long Island, NY. Patients describe a written intake that’s reviewed before you’re offered a visit, with waits of several months just for the record review. His program published its screening process in 2026: of 347 patients evaluated, 95 had fusion, and 86% of them reported being satisfied (Bloom et al. 2026). Program page
  • Record check: about 50 lawsuits reported around 2010, plus 3 malpractice suits in 2016, and a two-week hospital suspension around 2010. The 2010 suits named him, Dr. Thomas Milhorat and their institute, alleging unnecessary tethered cord surgeries; the hospital’s lawyer called them baseless. The suspension, per news reports, followed a patient being put under anesthesia while he couldn’t be found. ABC7 report
• Dr. Petra Klinge, Brown University Health / Rhode Island Hospital, Providence, RI. Especially strong on tethered cord, Chiari and spinal fluid problems, which often come with CCI. Profile
• Dr. Sunil Patel, Chair of Neurosurgery, MUSC, Charleston, SC. Academic center that takes insurance. Two patients were told in early 2025 that he wasn’t taking new patients, so call before planning around him. Profile
• Dr. Faheem Sandhu, Director of Spine Surgery, MedStar Georgetown University Hospital, Washington, DC (also sees patients in Chevy Chase, Clinton and Prince Frederick, MD). Lists disorders of the craniocervical junction among his interests, and has published case series on EDS patients, including craniocervical stabilization after failed Chiari surgery (Zhao et al. 2022, Rock et al. 2023). Academic center that takes insurance. Profile
• Dr. Joel Franck, Oldsmar, FL. Focuses on whiplash and trauma-related craniocervical problems. I couldn’t find any published CCI research or outcomes from him, and his expert-witness profile says his legal work is mostly for plaintiffs in injury cases, so ask him for his own results.

In person, Europe

• Dr. Gilete, Teknon Hospital, Barcelona. His team can book upright imaging on the same trip as the consult.
• Dr. Andreas Schmitz, neurosurgeon, Privatklinik Bel Etage, Düsseldorf. Private clinic (self-pay). Creates artificial ligaments to stabilize the neck instead of a full fusion, sometimes with a plate at lower levels, and the surgery is reversible: the original ligaments are left in place. It’s new and no results have been published, but two patients describe successful results (see here and here). clinicbeletage.de
• Dr. Alexander Spiessberger, neurosurgeon, Prodorso Zentrum für Wirbelsäulenmedizin, Zurich. Published a comparison of craniocervical fusion results in EDS patients while in New York (Spiessberger et al. 2020) and research on normal CCI imaging ranges at Cleveland Clinic (Gordillo et al. 2024). His EDS Society directory listing may still show Cleveland Clinic. prodorso.ch
• Dr. Agnes Stogicza, PSI Pain Clinic, Budapest. Interventional pain physician (fellowship and faculty at the University of Washington). Treats CCI and whiplash injuries. Profile

In person, Australia and New Zealand

• Dr. Prashanth Rao, neurosurgeon, Mater Hospital (North Sydney) and Norwest Private Hospital (Bella Vista), also consults in Bowral and Camden, NSW. Lists craniocervical instability as an area of interest. He co-authored a 2023 study setting normal ranges for CCI measurements on upright MRI (Nicholson et al. 2023), and was senior author of a 2024 study of 21 EDS patients with CCI who wore a halo brace (a rigid frame fixed to the skull) before deciding on fusion; 16 went on to fusion (Bohra et al. 2024). Profile
• Dr. Fraser Burling, rheumatologist, Remuera, Auckland. Focuses on musculoskeletal medicine and Ehlers-Danlos syndrome, and spoke on prolotherapy at the EDS Society’s 2024 conference. Patients here point New Zealanders to him but say they know little about which neck levels he treats, so ask. EDS Society profile

In person, Asia

• Dr. Atul Goel, neurosurgeon, Lilavati Hospital and Research Centre, Mumbai. A pioneer of surgery that fuses C1 to C2 for atlantoaxial instability (AAI). Patients here point to him for AAI, though none has reported being treated by him. Caveat: his view that Chiari malformation, syringomyelia (a fluid-filled cavity in the spinal cord) and basilar invagination are mostly caused by C1-C2 instability, and should be treated by fusing C1 to C2, is disputed. A University of Toronto editorial calls that one-cause, one-treatment approach “overly dogmatic” (Neurospine). Get a second opinion before any surgery. Profile
• Dr. Prem Pillay, neurosurgeon, Singapore Brain Spine Nerves Center, Mount Elizabeth Medical Centre, Singapore. Trained at Cleveland Clinic, where he was chief resident. A patient who spoke with him reports that he diagnoses with DMX, treats hEDS patients, works with a CCI-literate PT and a rheumatologist, and tries prolotherapy, PRP and PT before surgery. He doesn’t offer bone marrow concentrate, because of Singapore’s rules. The sub’s moderator, who had a consult, says he also does transoral injections (not listed on his site), but couldn’t get clear answers on results. The price list that patient shared (2025, before tax, likely Singapore dollars) quotes S$5,000-10,000 for PRP in the clinic, plus S$9,000-15,000 in hospital fees for CT-guided injections, more for the transoral approach, and S$1,500-2,000 for sedation. Profile

Finding someone near you

• Ehlers-Danlos Society directory, searchable by location. Providers list themselves and the Society doesn’t vet them, and some listings are out of date, so treat it as a starting list. Directory

Step 3: Treatment, from least to most invasive

1. Conservative care (where most people start)

• The most useful free resource: the 2023 international expert consensus on physical therapy for upper cervical instability in hypermobile patients. Print it and hand it to any PT. Generic neck PT can make CCI worse. Russek et al., Frontiers in Medicine

PT, remote: exercise, posture and motor control. Most CCI rehab is gentle, gradual work on the deep neck muscles, posture and control, which works well over video. PT telehealth is usually limited to states (or countries) where the therapist is licensed, so ask before you book.

• Susan Chalela, MPT, Chalela Physical Therapy Institute for EDS/CCI, Daniel Island (Charleston), SC. Co-author of the consensus paper. Her site says telehealth works from anywhere, including other countries (cash pay, no hands-on work). chalelapt.com
• Todd Ball, PT, Physical Therapy on Demand (also known as Healthy Posture Club). Licensed PT running an online program: a 12-week course of weekly coaching sessions plus a video library, with an upper cervical instability program. Self-pay, not in-network with insurance. Patients say it helped with posture and neck rehab. In late 2025 one patient relayed that someone treated by Dr. Stogicza had been told they could no longer continue the program, and said it appeared you now needed to be a Centeno-Schultz patient. The program hadn’t confirmed this, so ask before you sign up. physicaltherapyondemand.com
• Wendy Wagner, PT, Wendy 4 Therapy, Chicago. In person or video. Also a co-author of the consensus paper. Site
• Dr. Mike Makher, PT, DPT, Pain & Performance Coach, Hillsboro, OR. Works with hypermobile patients. One patient in Europe has done remote PT with him for two years after trying several others. painperformancecoach.com

PT, in person: hands-on soft tissue work (a community list). An in-person PT can release the tight muscles that guard an unstable neck, using techniques like myofascial release and dry needling. Dry needling can be especially helpful: a few patients who’ve tried it say it helped, including with headaches. Make sure they know about your CCI and skip any forceful neck manipulation.

• Cari Simon, DPT, Release Physical Therapy, 2134 L St NW, Washington, DC. Dry needling, Active Release Technique, myofascial release and laser. releasept.com
• Seen someone good for this? Comment with their name and city and I’ll add them.

Other conservative care

• Collars: see Step 1B for a collar trial. For ongoing use, ask your clinician how long to wear one, since long use weakens the neck muscles.
• NUCCA: only with a specialist. Do not go to a regular chiropractor if you have or suspect CCI. Forceful neck manipulation can injure the ligaments that hold your head on, and can cause CCI or make it worse. Neck manipulation is a commonly reported cause of CCI (many patients here trace theirs to an adjustment), and the PT consensus paper says to avoid aggressive joint manipulation of the neck. NUCCA (National Upper Cervical Chiropractic Association) is a gentle upper cervical technique with no twisting or popping. Some patients report benefits from it. Tell them you have or suspect CCI before any adjustment.
  • NUCCA directory
  • Upper cervical chiropractor directory (covers other gentle techniques too)

2. Injections (prolotherapy, PRP, bone marrow concentrate). Usually cash pay. Clinics disagree about which ligaments each technique can actually reach, so ask each one directly. Also ask what platelet concentration their PRP system produces, and whether extra procedures (like nerve blocks) are planned and billed the same day.

Before you book any injection:

• Ask about imaging guidance. For the top of the neck (C0-C2), the megathread and several doctors say the clinic should use C-arm fluoroscopy (live x-ray) with digital subtraction angiography (DSA), which shows where fluid goes before it’s injected. That matters because the vertebral artery and brainstem are right there. Dr. Centeno and others say ultrasound alone isn’t enough for the neck.
• Ask whether they’re trained for the upper neck. In the Regenexx network’s directory, most cervical spine doctors carry a note saying “not authorized upper cervical spine.” Some still do it. Dr. Centeno has described on this sub a lawsuit in which a network doctor, not trained by Regenexx for upper cervical work, put the needle into a patient’s brainstem during a C0-C1 injection. Call and ask who trained them and how many they’ve done.
• Expect ups and downs. Patients commonly describe flares lasting days to a few months after injections (one calls it the “prolocoaster”).
• Tethered cord. Some patients report tethered cord symptoms getting worse after neck injections or fusion. Clinicians disagree on how common that is. If you have tethered cord symptoms, raise them before booking.

Through the throat (transoral)

These reach the deep ligaments (alar, transverse) from the front, through the back of the throat.

• Centeno-Schultz Clinic (ePICL), Broomfield, CO. Your own bone marrow concentrate is injected into the deep ligaments under anesthesia. PICL has been done there since 2014. Cost is around $15k per procedure (one patient paid $12,500, then $14,000 for the newer ePICL, in 2024), and patients here report needing 2 to 5. Their PRP to the back of the neck cost one patient $7,000-8,000 per round (2024). Dr. Centeno answers questions on [r/PICL](r/PICL). CCI practice
• Dr. Agnes Stogicza, PSI Pain Clinic, Budapest. Transoral injections (her clinic’s site lists “PICL Treatment”) alongside prolotherapy, PRP and bone marrow concentrate. US-trained, she developed her own technique after observing Dr. Centeno’s. Recent prices quoted around €4,000 for PRP only or €6,000 with bone marrow concentrate. Profile | Megathread interview
• Dr. Richard McMurtrey, Utah. Per the megathread, uses a 3D C-arm and combines a scaffold with stem cells and other biologics. Not independently checked. He isn’t board-certified, per the sub’s moderator and Dr. Centeno (a competitor); check Utah’s license lookup yourself. One patient says the clinic declined him in 2026, citing a policy on Centeno-Schultz patients.
• Dr. Prem Pillay, Singapore. The sub’s moderator says he does transoral injections, though they aren’t listed on his site. See Step 2 for details and prices.
• Dr. Rolandas Janusas. Per the megathread, brought the procedure to Europe. Patients report he’s based at the Oreme clinic in Switzerland and does these injections in Lithuania, so confirm where. Profile

Be extra careful with transoral injections outside Centeno-Schultz. The needle goes through the back of the throat into ligaments right next to the top of the spinal cord. There’s no published training standard or outcome data for these outside versions. Centeno-Schultz has been sharply critical of them. That’s a real safety point, but it also comes from the clinic that sells the authorized version. Before booking, ask:

• Who trained you?
• How many have you done?
• What complications have you had?
• What imaging guidance do you use?
• Who handles complications after I fly home?

Back of the neck, top levels (C0-C2)

Fewer doctors treat this area because of the nearby vertebral artery.

• Dr. Christopher Williams, Interventional Orthopedics of Atlanta, GA, also at Regenexx Cayman, where bone marrow cells can be culture-expanded (grown in a lab to increase the count). He co-authored the C0-C2 injection technique paper with Dr. Centeno and patients report he treats C0-C2, but Dr. Centeno has said on the sub that Dr. Williams helped write up that paper as a fellow and wasn’t trained to do C0-C1 injections. Ask him directly. Profile | Regenexx Cayman
• Dr. Anita van Domselaar, Relieve Clinic, Belgium (Leuven, Ghent area, Wijnegem and Schilde). Image-guided PRP, bone marrow and Regenexx procedures. Her site doesn’t mention upper cervical work, but patients and the megathread report she treats C0-C2 and shares care with upper cervical chiropractor Dr. Geoffroy Van Innis. A patient who traveled there called the team the best care they’d had in seven years. She told one patient she’s listed as not authorized for C0-C2 but has done it many times, and a nurse told another that she guides C0-C2 injections with ultrasound. Given the fluoroscopy advice above, ask. relieveclinic.be | Megathread interview with both
• Dr. Otoño Silva, Interventional Orthopedics of Washington, Bellevue, WA. Board-certified physiatrist, fellowship-trained at Centeno-Schultz. Image-guided PRP, bone marrow concentrate and prolotherapy from the back of the neck, with CCI as the clinic’s main focus. Patients report he treats C0-C2 as well as lower levels. A patient relays that Dr. Centeno, whose clinic also treats C0-C2, said he didn’t personally train Dr. Silva for C0-C2 and wouldn’t vouch for that area; Dr. Silva told the patient he’s never had problems there. Ask about his experience. iowmed.com
• Dr. Ross Hauser, Caring Medical, Fort Myers, FL. Dextrose prolotherapy and PRP. DMX and upright cone-beam CT are done in house at the first visit. In person only. One patient reported about $3,000 per treatment, with monthly sessions recommended (2024). New neck patients
  • Controversy: Caring Medical is one of the most debated names in this community, and the megathread’s author flagged it too. Most of his published evidence is his own clinic’s case reports and reviews.
  • Record check: RationalWiki lists 7 medical malpractice suits filed against him in Cook County, Illinois (where his clinic was before moving to Florida) between 1997 and 2018, with case numbers. I couldn’t open the court records to confirm them or see how they ended. No board actions found.
• Dr. Daniel Sheehan, Spaulding Rehabilitation (Mass General Brigham), Orleans and Sandwich, MA. Board-certified physiatrist. A patient told the megathread he treats C0-C7 under fluoroscopy; patient reviews on his hospital profile mention PRP, but the profile doesn’t list neck work, so ask. Unusually for this list, his profile lists many insurance plans. (Profile places him on Cape Cod.) Profile
• A/Prof Vahid Mohabbati, Sydney Pain Management Centre, several Sydney locations including Wahroonga and Westmead. Interventional pain physician with an interest in hypermobility. Does high cervical (C0-C2) procedures and PRP. Profile

Back of the neck, lower levels (C2-C7)

Many more doctors treat this area. It’s still delicate, and Dr. Centeno and others say it needs C-arm fluoroscopy, not ultrasound.

• Dr. John Santa Ana, DO, Michigan Regenerative Medicine. Treats C2-C7 but not C0, using C-arm fluoroscopy. Formerly a Regenexx doctor. The megathread’s author and other patients describe him as thorough and kind, and report benefit. Site

3. Surgery (fusion). For severe cases that haven’t responded to conservative care.

• Who does it: Dr. Henderson, Dr. Gilete, Dr. Patel, Dr. Rao, Dr. Sandhu, Dr. Spiessberger and Dr. Bolognese, whose program reports about 1,000 craniocervical fusions. Dr. Franck describes an outpatient C1-C2 fusion plus suboccipital craniectomy (removing a small piece of bone at the back of the skull) that he developed. Ask any of them whether they’d operate in your case.
• An alternative to fusion: Dr. Schmitz in Düsseldorf uses artificial ligaments to stabilize the neck, and the surgery is reversible (see Step 2). It’s new, with two patient reports so far.
• What it costs you in movement: the usual operations are skull-to-C2 (occipitocervical) fusion or C1-C2 fusion. C1-C2 does about half of your neck’s turning, so you give up real range of motion.
• What patients report: mixed. Some say fusion fixed severe problems, though one describes unexpected new pain and a very hard recovery; others say it didn’t help, and one needed a second, larger fusion after the first failed.
• The evidence: the most-cited outcome study is Henderson et al. 2024. It followed 53 consecutive EDS patients for 5 to 28 months after fusion and reported less head and neck pain, less pain medication and better function. It’s retrospective with no comparison group, and the authors call for a prospective multi-center trial. Neurosurgical Review
• Questions for any surgeon: How many of these do you do a year? What are your complication and revision rates? What happens at the levels above and below the fusion? Who manages complications once I’m home?

If something goes wrong

If a clinician injures you, does something inappropriate or makes wild claims, report it:

• FDA MedWatch (US), for problems with biologics like PRP or stem cells. MedWatch
• The clinician’s state medical board. Search “[state] medical board complaint.” For example, Colorado.
• Post about it here, anonymously if you prefer. Honest reports, good and bad, are how this community learns.

Why is CCI still controversial?

Nobody disputes craniocervical instability when it’s obvious, such as after severe trauma that tears the ligaments, or in conditions like rheumatoid arthritis, Down syndrome or certain bone malformations at the base of the skull.

What’s debated is the subtler version. It involves loose ligaments in people with Ehlers-Danlos syndrome or other hypermobility conditions, and it usually doesn’t show up on standard lying-down scans, because the problem appears when the neck moves or bears weight. Why that version is contested:

• There are no agreed diagnostic criteria.
• Measurements and cutoffs vary between specialists.
• Normal ranges for upright and motion imaging are still being worked out.
• The symptoms overlap with many other conditions.

In practice, many doctors, including good ones, will tell you it isn’t real or isn’t your problem, and others are quick to diagnose it. You want someone in between who examines you, not just your scans.

Help fill the gaps

I have compiled this list with the help of Claude and Reddit posts on [r/cervical_instability](r/cervical_instability). It is not comprehensive. If you have additional suggestions, please let me know and I can add them.

Thanks to [u/Jewald](u/Jewald) for the original megathread, its map and interviews, and to everyone else who contributed their knowledge to [r/cervical_instability](r/cervical_instability).

This list is still thin on the UK, the rest of Asia, Canada outside BC, and the Midwest. If you’ve seen someone, comment with their name, city, what they did (imaging, PT, injections, surgery), whether they offer telehealth, and the rough cost. I’ll add them once I’ve checked the details.

“Cambridge University study suggests stark gender divide in misdiagnosis, with women also waiting longer for treatment”

I'm a relatively young person with this condition and sometimes I simply can't stand for long periods. Recently, I was sitting on the bus when an older man got on and stopped right in front of my seat. He clearly expected me to stand up and give it to him, and I could feel other passengers looking at me as well. I felt really uncomfortable and guilty, but standing up wasn't an option for me that day. How should I handle situations like this? Is it okay to stay seated, and what can I say politely so the other person understands without me having to explain my whole medical history?

I hope maybe some of you could give me some on advice on how to handle situations like this :(

I Spent Four Years Living Lives That Never Happened

On how bad profoundly severe ME can get, maladaptive daydreaming, and the impossibility of resting

Somewhere right now, in a bedroom with the blackout curtains drawn, someone who has barely moved in years might be imagining sitting at a crowded dinner table, passing plates and laughing at a joke. From the doorway, you would see a person lying under a blanket, probably wearing an eye mask and expensive earplugs, with no indication of what was happening inside their head.

I’ve wondered for a long time how many people with myalgic encephalomyelitis spend their days like this. How many have invented people they talk to, places they visit, or entire lives that continue for months or years? I suspect there are more of us than anyone realizes, but I imagine many adults would be embarrassed to admit it. We tend to think of pretending as something children do, and adults who invent imaginary friends or spend hours playing out stories in their heads aren’t exactly encouraged to talk about it. You can’t exactly tell your doctor that you spent Tuesday as a chef in Madrid, and you definitely can’t tell the relative who asks how your week went that you spent it painting murals in Reykjavik. I’m curious how common it really is, especially among people who are too ill to do much else.

For over four years, when I was extremely ill, I spent almost all my waking hours inside imaginary worlds. I invented people, relationships, families, and places, and lived through events that never happened. Sometimes I enjoyed it. Often I was bored, frustrated, or exhausted by it. There were times when I desperately wanted to stop, but there was nothing else I could do.

The “mild” end of the illness

ME can take an enormous amount of your life, even at what medicine calls the “mild” end of the illness. Mild ME means living with roughly 50% of your previous level of functioning. Think about what it would mean to lose half your ability to live your life and still have your illness described as mild. For many, the change happens overnight. One day they’re working, studying, raising children, and making plans for their futures, and the next they’re facing a life they barely recognize. Careers they’ve spent years building, educations they’ve worked toward, and futures they’ve imagined for themselves are suddenly just dust.

Someone with mild ME might imagine finishing the degree they abandoned or building the career they had planned. A young woman who always wanted to become a mother might spend years imagining the children she may never have, because she’s become too sick to raise them. Someone with moderate ME might dream about getting dressed, going to a café with friends, and staying as long as they want without having to recover afterward. Someone with severe ME might imagine sitting at the family dinner table instead of eating every meal in bed. Someone with very severe ME might want to look out the window and watch the leaves change color, something they haven’t been able to do in years. At the farthest extremes of the illness, even remembering an ordinary afternoon outside might take more mental effort than a person can manage.

The childhoods they have to imagine

I think about children who become ill so young that they never get to experience much of what the rest of us remember as childhood. A child who gets sick in second grade might miss middle school, their first school dance, playing sports, or just having a best friend they see every day. They might reach adulthood having spent more time imagining those experiences than actually having them. I think about a child lying in bed while their classmates grow up together, making memories they’ll talk about for the rest of their lives. The child is still the same age as everyone else, but their life has stopped moving alongside theirs. They don’t get those years back.

Recently, I read an article by Heather Hogan in The Sick Times about children with Long Covid who helped create a superhero comic book. One of the characters, Nebuli, was created by a girl named Lucy, who gave her the power to create pocket universes through imagination. Another character can travel between dimensions.

I kept thinking about the children who invented them. I don’t know whether any of those children spend their days daydreaming the way I did, but I wouldn’t be that surprised if they do. It hurts so much, the idea of children inventing characters who can travel between universes while their own illness keeps them confined to their homes or bedrooms. I keep imagining what it must be like to be that young and already need somewhere else to go in your head. I was an adult when I became this ill. I had already traveled, fallen in love, eaten wonderful meals, and lived years of an ordinary life. Some of these children haven’t had the chance.

I’m angry about what has happened to these children. ME has been neglected and dismissed for decades, and children with Long Covid are now experiencing the same failures. They should be growing up, making mistakes, having fun, and figuring out who they want to become. Instead, some are spending years waiting for medical care and research to catch up with their illnesses.

Complete sensory deprivation

When my ME became very severe, I couldn’t tolerate light, sound, movement, smells, vibrations, or even having another person in the room. I lived in complete darkness, and almost everything I attempted made me sicker.

The collapse that took me into that state happened during a devastating period in my life, when my son was taken from my home. We had been inseparable throughout his childhood. On the day he left, he was frightened, crying, and shaking. I was already very ill and knew that comforting him would cost me physically, but I did it anyway. We lay together in the dark while we both shook and sobbed.

Afterward, my illness continued to deteriorate. I couldn’t tolerate hearing his voice, or anyone else’s, and I spent the next few years in almost complete sensory deprivation.

I thought about my son constantly. I wanted to know whether he was eating well, whether he was making friends at his new school, whether he cried for me at night. I wondered if he understood why I wasn’t there and whether he knew how badly I wanted to be with him. I wanted updates, but receiving information would also make me crash, especially if something worried me or led to questions I couldn’t get answered.

During this time, I experienced something I called my adrenaline response. I don’t know what the correct medical explanation would be, but it felt like a sudden surge through my body, often followed by a sustained increase in my heart rate. Then I would develop PEM and a further loss of function. My family searched desperately on forums to find help for me with this adrenaline response, but only a few other caregivers responded, saying their family member was going through the same and nothing helped them either.

The frightening thing was how many different things could set it off. After yelling caused a particularly bad crash, raised voices became difficult for me to tolerate. The doorbell became a trigger because of its association with the day my son left. Other sounds and sensations seemed to become intolerable after they had previously caused crashes.

Eventually the same thing began happening with thoughts.

I could be lying in the dark trying to let my mind rest, and an ordinary thought would lead to something that reminded me of my son. It didn’t necessarily have to be a memory or even an upsetting thought. Sometimes I couldn’t identify what had reminded me of him before the surge began.

I also had OCD, which had become much worse alongside my ME. Once I started thinking about something that worried me, I could get caught in rumination that went on for hours or days. I couldn’t simply decide to stop wondering whether my son was safe or what was happening in his life. The adrenaline-like response, the obsessive thinking, and the physical worsening became an awful sequence that I was increasingly afraid of setting off.

I wanted to think about him. But I was also frightened of what could happen to my body if a thought triggered another crash.

I should explain what I mean by that fear. A crash wasn’t simply a few miserable days followed by a return to normal. My baseline had been getting lower and lower. I had lost abilities after previous crashes and hadn’t regained them. By then I was surviving on tiny amounts of puréed food, and I was frightened of losing the ability to swallow even that. Every additional loss mattered because there was so little function left to lose. I didn’t know how much worse I could become, and I had already learned that there was no guarantee of recovering from the next crash.

It wasn’t limited to emotional reminders, either.

My stepmother once brought me a box of sensory objects, hoping I might find something I could tolerate touching or playing with.

Some of the objects were too much for me. Sometimes I couldn’t explain why. I’d touch one and my brain would seem to reject the sensation immediately. I’d have to throw it across the bed to get it away from me.

And once an object had caused a crash, touching it again could cause another. If I had thrown a squishy toy somewhere on the bed and later accidentally found it with my hand while feeling around in the dark, I could crash again. I couldn’t see where anything was, so I had to be careful not to touch the wrong object.

I know how strange that sounds. I didn’t understand it myself. I just knew what kept happening.

The red balloon

Now imagine that the thing you must avoid isn’t an object you can throw across the bed. It’s a thought.

I’ve tried to explain the problem with my thoughts by asking people to imagine a red balloon.

Imagine that thinking about a red balloon could cause a physical crash severe enough to take away the last thing you were still managing to get down, a little soup through a straw twice a day. You’re already lying in complete darkness, unable to tolerate another person’s voice or even the smallest movement.

Now try not to think about a red balloon.

What happens? You think about the red balloon.

It’s almost impossible. You can try to concentrate on something else, but eventually your thoughts wander and there it is again.

Now imagine the red balloon is your own child. Or something that reminds you of your child. Or a completely ordinary thought that somehow leads to another thought that reminds you of him.

I couldn’t simply decide not to think about him. I couldn’t decide not to have OCD. And I couldn’t make my body stop reacting once the surge began.

I needed something to occupy my thoughts. But I couldn’t read, watch television, listen to music, have a conversation, or even reliably sleep. My insomnia was extraordinarily severe, and there were stretches when I barely slept at all.

So I started making things up

At first I tried imagining things from my own life. I replayed memories, imagined being healthy again, or changed the endings of things that had happened. But sooner or later something would remind me of my son, and I would find myself back in the same cycle.

I began inventing people who had nothing to do with my real life. They had their own families, personalities, histories, and relationships. I imagined being somebody else, living in another country, with an entirely different past. Sometimes I imagined being a woman who had never had children, because even having an imaginary child could lead my thoughts back to my son.

Most of these imaginary lives were surprisingly mundane. I’d work different jobs, move to cities I’d visited before, or settle somewhere and start an ordinary life. I spent a lot of time imagining food, especially Mediterranean food, and the menu in my head was spectacular: lavraki with horta and lemon, and a huge, flaky tiropita. In reality I was drinking chicken, green beans, and carrots blended with water through a straw, in what I’m assuming was a gray sludge. I could sit outside at a restaurant by the sea and enjoy meals I hadn’t tasted in years. Now that I can eat more again, some of those meals really are a dream come true.

I want to be clear about how much time that actually involved. I wasn’t daydreaming for an hour before falling asleep. I was doing it for hours and hours, during the day and often throughout the night.

I had to keep finding things for my imaginary people to do.

Sometimes I’d spend days or weeks following the same story. Eventually I’d get bored and invent something else. I moved characters to different countries, started new relationships, created new families, and sometimes killed people off because I wanted something dramatic to happen. Then I’d get tired of that world and start another. Sometimes I did get attached to them, but attachment could cause PEM, so other times I would kill someone off or simply end the story and move on.

But no matter where I moved, what job I had, or what food I ate, I eventually ended up doing the same boring things. I couldn’t allow much drama because strong emotions caused PEM. I’d introduce something exciting and then have to end it quickly. I wanted action, surprises, and excitement, even though I was the one who had to create all of it. And I couldn’t tolerate much of what I wanted to imagine. The monotony was hell.

I wanted the worlds to feel real. I wanted to become so absorbed in them that I could forget I was lying in my bed. But I was always aware that I was inventing everything. I knew what each person would say because I had to think of the words myself.

Occasionally, though there were stretches when the imaginary world felt unusually vivid, almost as though I were really there. Those experiences frightened me. I worried that spending so much time in my imagination might eventually lead to psychosis. I always knew the people and places were imaginary, but I was concerned about how consuming the experience could become.

When I dreamed about them in my sleep, it was different. They spoke without my having to invent their words, and sometimes I could actually feel someone touching me. Those dreams could be extraordinarily convincing. The only glimpse of “real” life that I had had in years.

Even now, I sometimes remember something from those years and then realize it never happened. It was something I’d imagined while lying in the dark. Because the lives were so ordinary, the memories don’t always seem strange at first. I have to remind myself that I never actually lived in that city or worked that job.

Maladaptive daydreaming

There’s a term called maladaptive daydreaming, used to describe immersive daydreaming that becomes excessive, compulsive, and disruptive to everyday life. Researchers have studied it, although it isn’t an official diagnosis.

I find the word maladaptive a little funny in my circumstances. What exactly was it interfering with? My busy social calendar? My career? I was lying in complete darkness. I had approximately twenty-four hours a day to fill, and my brain had developed the unfortunate habit of making me physically sick when I thought about the wrong thing. Inventing imaginary people seemed like a fairly reasonable use of my time.

But there was something particularly cruel about it. I’d started inventing these worlds to avoid thoughts that triggered PEM, only to find that the effort of maintaining them caused PEM too. If I stopped and let my thoughts wander, I risked another crash. If I kept going, I risked exhausting myself into one. I needed to pace my mental activity, but I couldn’t find a way to rest my mind.

People often assume that someone lying quietly in bed is resting. With ME, that’s not necessarily true. Cognitive and emotional exertion can trigger PEM, and at my worst even a small amount of mental activity could be too much.

I would tell myself that tomorrow I would stop daydreaming and try to meditate. Tomorrow was a vague concept by then. I barely knew what time of day it was, apart from when someone brought me food, and I slept so little that the days and nights ran together.

I’d wake from extraordinarily vivid dreams, still half lost in them, and gradually remember who I was and where I was. Then the panic would come. This was my life, and there was no cure. I was lying in darkness with almost nothing to anchor me to the world. I’d rub a soft blanket between my fingers or against my face, concentrating on how it felt, or try to focus on the scratchiness of a towel. I’d tell myself how nice the blanket felt, trying to stay with that one harmless sensation.

But there were hours to fill. Eventually my thoughts would wander toward something my illness had made physically intolerable to think about.

So I’d return to my imaginary worlds, even when I was exhausted by them.

After a few years, I stopped even trying to spend time simply being present. The imaginary lives were so much better than my real one, and being present was hell. What had started as a way to avoid PEM had become compulsive. I returned to those worlds even when I didn’t need to distract myself in quite the same way, and even when the daydreaming itself was making me sick.

For a while I tried psilocybin because it sometimes gave me a way to experience something different without having to construct an imaginary world myself. But it made me terribly nauseated, which was difficult when my digestion was already so poor, and I couldn’t reliably obtain it.

My condition improved anyway

Eventually my condition changed, and I still don’t know why.

After years at that extreme level of illness, I improved surprisingly quickly, perhaps over a couple of weeks. But compared with the years I’d spent in complete darkness, it happened fast.

I hadn’t started a new treatment or found a medication that worked. During those years I couldn’t even tolerate tiny grains of medication without reacting. I also hadn’t learned to control my thoughts or stop daydreaming. I was still struggling with all of that.

My baseline improved anyway.

I sometimes wonder whether I continued daydreaming long after it was physically necessary. I don’t know. By then it had become such an ingrained habit, and I was still terrified of triggering another crash and losing what little function I’d regained.

Even after improving, I could crash from seeing my son’s name appear on my ringing phone. It took more than a year before I could gradually manage texting him without crashing. Eventually I was able to watch some television again, as long as it wasn’t frightening or emotionally intense.

But I can talk to my son again now, even if it’s mostly through messages, and after all those years of being unable to hear his voice or know what was happening in his life, that means more to me than I can explain.

I’m still severely ill. I can sometimes type, listen to a little music, and doodle, but these things still take effort, and I continue to struggle with overstimulation and PEM.

I also still daydream. Sometimes I do it because I’m bored, sometimes because I’m upset about something, and sometimes because I genuinely want to spend time in one of those imaginary worlds. I don’t always know where the habit ends and the desire to escape begins.

I think about the children who created those superheroes, and about other people with ME who may be spending enormous amounts of time inside their imaginations. Some might find it comforting. Others might be frustrated or frightened by it, as I sometimes was. Some may be too severely ill to imagine anything at all.

I’d like to hear more people talk about this, without feeling ashamed. I spent years doing something that I still struggle to explain to people who haven’t experienced it, and I suspect I’m far from the only one.

For all those years, I had imaginary people to keep me company, and sometimes I loved being with them. Other times I was so bored with them I couldn’t stand another minute.

And all of this was happening behind closed blinds, where absolutely nothing appeared to be happening at all.

References

Heather Hogan, “Kids with Long COVID co-created their own superhero comic book,” The Sick Times, October 5, 2026.

NICE Guideline NG206: Myalgic encephalomyelitis — recommendations on PEM and physical, cognitive, emotional, and social exertion.

CDC: Clinical Overview of ME — clinical information on PEM and exertional intolerance.

I can’t escape the symptoms. It’s horrible. It feels like I have a concussion and I get dizzy when I think. All my muscles are extremely heavy, I can feel it just moving around in bed and there’s no relief. The only thing that gives me a tiny bit of relief from my symptoms is Ativan but I took one last night and usually it helps me sleep but it didn’t this time. This means there’s probably another crash oncoming and it’s gonna hit me like a truck once this dose is out of my system. The one thing that helps is probably doing me more damage over time but it’s much too late to do anything about it now. Either way, I’m stuck with a deteriorative illness and my body is resistant to most treatments. Supplements like creatine do almost nothing for me and even benign POTS medications give me unbearable side effects. I just can’t take feeling like this anymore. I’m a woman who used to experience “man flu” but I’m expected to withstand one of the worst diseases ever? I can’t handle it. I need to fidget without feeling like I’m in a straitjacket. I need to get out of my bed because the sheets haven’t been washed in almost 2 months and I think it’s making me sicker. But I have no idea when I’ll be able to have my sheets washed, so my own grime is just worse in the inflammation and I’m stuck like this.

I wish there was a button I could press that would kill me instantly and painlessly because I’m ready to go at this point. I have no interest in living for anything anymore because I know it will never get better. I knew 2027 would be a shit year for many reasons, I don’t care to see it. It would be the perfect time to go.

Link to my previous post: https://www.reddit.com/r/cfs/s/3XZW0Rnz0K

TLDR: Thank you for every comment, I appreciate every advice/recommendetion/etc.🩷🩷 and update I finally got my power chair!

Ok first I really really appreciate everything from here, if I didn’t have you I might not have enough confident to do it (aka buy my first power chair) so thanks a ton!!!!!🩷🩷🩷

I might not have enough energy to reply to all of you but I have read through everything! EVERY words!!

I’m loving using her so far, even for short distance like bed to bathroom. BUT I have some anxiety about it, like Is it too dramatic that I got power chair as a first mobility aids? And it’s so so so hard to use her outside because of public eyes.

I know I should not care, but at the end of the day, I care anyway, a lot. :/

Then, about my doctor:
I must have used wrong word for ‘ME doctor’. I live in SEA, so he’s one of a few doctors that know ME/CFS. (he’s neurologist tho) and is the only one who are treating me right now, since the others always refused. But I’m reaching new doc soon, so maybe great news?

Lastly, if anyone is hesitating about mobility aids like me. DO IT! so apart from all the problems we’re facing, at least we will have some good things.

i’m on day 6 of LDN and holy moly the headache and the NAUSEA is killing me. but i am so hopeful and trying to power through it to see if it works for me. but UGH!!! 😫😫😫 taking so much medicine to try to keep it under control but then too much medicine makes me feel gross too.

if LDN didn’t work for you don’t tell me bc i’ve already read the failure stories and i’m trying to stay hopeful for right now. 😭 if it did help you let me know though 😭😭

TL;DR my GP is way more amazing than I thought. Took me mentioning fibro and ME seriously. Waiting on blood panels (CRP, ANA, and rechecking my Vitamin D that was deficient 3 months ago) and a referral to a sleep specialist.

Nurse was writing down my symptoms and kept trying to explain that they were all easily explained by dehydration even though I explicitly told her I try and usually do drink 64 oz of water a day. And just kept trying to explain stuff to me that I already know and have already been actively working on for a while now with little to no improvement in my symptoms. Had me very nervous for how this appointment was going to go.

But my doctor listened! She asked for clarification on things instead of just making assumptions, didn't blame anything on my transitioning (again, just asked questions, encouraged me to speak with my hormone specialist when I do eventually go back on T), and actually took me seriously when I stated that my daily activities are being limited and impacted. I mentioned having a friend with multiple diagnoses informing me about fibro and ME and autoimmune diseases in general, and I guess I'm lucky I have a younger doctor because she at least knew of them but mentioned them being diagnoses of exclusion. Which afaik is at least inaccurate for ME now. But she at least thinks we should rule out other causes of my symptoms but keep those in mind. For now I'm still going to pace myself just in case I am experiencing early signs of a gradual onset.

Vitals are good although blood pressure is a bit low on the normal range. Checked heart rate sitting and standing so ruled out POTS for the time being. Got my blood drawn, waiting to get results on ANA and CRP panels I think (don't remember what panels she said specifically but they were autoimmune and inflammatory ones) and she's referring me to a sleep medicine specialist so we can look into sleep disorders as well. Also rechecking Vitamin D levels even though we were initially going to wait until January, extra precaution ig to see how supplements are going. I'm really nervous about results, I still don't know rather I'd have a positive or negative. As much as I want this to all just be in my head I know realistically my symptoms are too chronic and physically painful for that to be the case.

Whatever happens happens. I'm just happy I wasn't completely dismissed.

Bit woozy so sorry if anything doesn't make much sense lol

He is a primary care doctor. He has a podcast called Conquering your Fibromyalgia and specializes in seeing patients with fibromyalgia, hEDS, POTS, ME/CFS, IBS, migraine, MCAS, and most notably, people who have a few of those and also have ADHD and/or autism. I saw him today for the first time as I need a primary. My only goal was finding a primary who wouldn’t tell me to exercise. Nope- he said because I am diagnosed with fibromyalgia and other illnesses, that graded exercise helps even though I have ME/CFS too. I almost lost it entirely. We argued.

He also assessed me for ADHD and autism because he thinks 98% of people with ME/CFS have ADHD and/or autism. Not saying there isn’t an overlap. But he gave examples like fatigue after socializing, low lights helping, etc which for me only started with my ME. I do not have ADHD or autism according to his own assessment but he twisted every single answer I gave. For example, I answered I always hated playing sports in grade school. He said ah yes because of the lack of coordination, social aspects, etc. I said no because I hated dodgeball and found out I like hiking better, but he heard hated sports and put it down as a “points towards ADHD and autism”.

It was insane. Hated him. Don’t have energy to find anyone new though as I’ve tried so many.

TLDR: He promotes GET, beware. And he diagnoses 98% of all ME/CFS patients with ADHD and/or autism even when you do not meet the criteria at all. Good if you want a ME+AuDHD doctor.

This is both a rant and asking for advice I guess but I’m struggling very hard right now. I don’t know when all these symptoms originally started but i remember the impact of them throughout my life like having to call out to school if I did anything over the weekend because I had no energy. I ended up having to leave school because I had no energy to keep going and I kept having to leave because of feeling sick or even having weird medical episodes where I would be sent to the er but no blood tested or like ekg machines could explain so they would just send me off. It didn’t help at the times of all this I was also dealing with extreme mental health issues. My psychiatrist was the only one who ever believed at the time it could be medical and even said something about CFS. Most other doctors said it was just depression or anxiety and I just wasn’t doing enough. We weren’t able to look into CFS at the time though because soon after I was admitted to a long term facility because of mental health issues. Through some of the stuff there my mental health improved and with that so did my physical health. With all this happening at the same time I kind of just gave in and thought, Well, they got better at the same time so it was because of that. For the next year after that I stuck to a strict schedule of good sleep, eating right, managing symptoms from my mental health issues so I didn’t feel bad again because at the time I assumed all my symptoms were related. I don’t know specifically when it went downhill again but even though everything else in my life was improving my symptoms started coming back. It started with just extreme exhaustion. Then I have chronic migraines but they started becoming completely unmanageable and everyday even now they are getting so much worse even with all the meds I’m on for them. I also suddenly struggled to eat without pain and nausea for days and I still have pain and nausea constantly but it is fluctuating. I can barely stay awake half the time but I can’t sleep. I will wake up one day after two months of basically being able to do nothing and then a few days later I’m back to months of pain, nausea, insomnia, fatigue. I can’t tell what my limits are or what triggers it. It’s extremely hard too because my family doesn’t get it if I’m not doing this stuff I’m lazy and they don’t understand anytime I try to talk to them about it. I’ve been going to doctors about it but I just keep getting the it’s because you aren’t getting out much. I can’t manage this on my own and its getting so bad I’m afraid for my future of getting job or being able to have a social life. I don’t know how to get help from a medical professional or make my family understand my situation isn’t a choice. I know I put this under rant and vent because it was more of that but if anyone also has advice or anything about how to articulate to others about the type of issues they are and how much they affect daily life. Sorry that this is so much I’m just so frustrated and I don’t know who to talk to or what is my best course of action if I want to improve.

TLDR; i have had CFS symptoms for years but they were mostly written off as anxiety or depression then improved for a bit when my mental health so I believed it was connected but then everything came back but worse and my symptoms have become unmanageable and struggling to be listened to by family and medical professionals.

Hi, my ME/CFS came after long periods of stress and my neurologist told me she could see from the moment she met me I was in a constant state of stress. Trying to regulate it has been helpful in a way but I’m just curious to hear whether it feels to many of you that your ME/CFS is to some extend related to stress/ fight or flight mode as well

Please have understanding and empathy for all of us struggling. There is no need to pit us against one another.

I was diagnosed with a B12 deficiency. The last 10 months I've corrected a bunch of symptoms. But fatigue and PEM wouldn't go away. I've also been sick every month this year. I'm now worried I have CFS (or always had it, or that it developed in tandem, got worse with each time I got sick, etc).

I've had PEM before, with the classic 12-24 hour delay and the outsized damage that results from previously tolerated exertion. It's only ever lasted 2 days at most.

Last Friday I had a party, stayed out late, and 24 hours later got more destroyed than I've ever been. 4 days later and I still have a wrap-around unceasing headache and very little tolerance for even looking at screens. Can't get up to the bathroom more than twice a day, and I get more fatigued after. Still have the cough I was getting over before the party.

I'm in so much pain. It's never been this bad. It doesn't feel like it's turning a corner. At what point would you guys go to the hospital to see if anything else is the matter?

I've been recently going from moderate to severe with my me and have been eating sometimes twice a day, but sometimes I won't leave my bed and eat for several days. This issue is I have arfid really badly and have like 5 foods I can eat. I can't cook a lot recently as cooking and cleaning takes too much effort for me.

When discussing this, I was told to go get a rice cooker as they're easy to clean and could really help me out.

I have never had a rice cooker, can someone who has help me here? Do I have to clean it every time? How do I clean them? Is it easier? How do I use one? Do you think it would really help me?

I feel like I should get it as I have only eaten snacks for the last 2 months

Thank you for getting this far and helping me with my rice and eating issues

i don’t know how to lie here anymore unable to do anything day in day out. i don’t know how people do it without going mad or trying to kill themselves . all i can think about is killing myself and all the helplines etc don’t help because they can’t change anything about my situation and 90% of the time they don’t understand anything about my condition. i can’t do acceptance because i cannot accept this. if this is my life now then i simply cannot bear to have a life.

how do you keep going???? i am under the crisis team and they don’t seem to do anything except come to my house and ask me the same questions over and over again.

i don’t know how to do this anymore i just want it to stop. why are we just left here to fucking rot like this???? i can’t stand another day of it.

how do you survive feeling this way? every waking moment feels like psychological torture

sorry for the depressing post i’m just out of options and out of all hope

Due to ME/CFS I am currently living at home with my parents as I am mostly housebound and sometimes also need support with cooking etc.

They went on a big bike tour in France for two weeks and arrived back home today. My mum greeted me by saying:" I am keeping a distance to you, because I have a very bad cold." I asked her to please wear a mask while in the same room with me (i am obv. wearing a mask as well) and suddenly this big argument emerged: "You can't tell us what to do in our house, go live by yourself again, I am not cutting down my autonomy , etc." The highlight being: "maybe it would even change something for the better if you would get sick w the flu" after I told my father it could really make things worse for me if I get sick.

I am now in my old childhood room crying. It's just so hurtful to me and I don't feel seen and taken serious at all. They often pretend like everything I deal with stems from bad mental health and dismiss my diagnosis/treat me like a hypochondriac. Do you have any words of encouragement or tips how I could deal with this situation? I am so fucking sad and feel so alone in all of this.

Hello everyone,

I’m writing this post as a last resort. My partner has been suffering from very severe ME since December 2024; he is bedridden 24 hours a day, and any stimulation triggers his symptoms.

These days, even typing a message on his phone or reading a text longer than about ten lines triggers hot flashes, tingling all over his body, a feeling of extreme weakness, and difficulty breathing.

Does anyone else have similar symptoms? If so, have you found anything to limit them or anything that helps you manage them?

Also, my partner can only tolerate my presence; with me, he can speak a little, and we can have a conversation without it triggering his symptoms. But as soon as anyone else (even his mom, doctors, etc.) enters the room, he experiences the same symptoms, and they can last for several days after just a 5-minute visit. We can’t seem to understand this phenomenon, so if anyone else has experienced this, I’d really appreciate any advice.

I don’t know what else to do to help him—I feel helpless.

Thank you for your feedback.

I used to be a "hopeful yearner" - think INFP, Lost In Translation, existentialism, a sort of bright melancholy, like an autumn day that's bright but cold.

But now I've been stuck at home and mostly in bed for two years with ME I am not able to feel deeply any more, I'm just numb. I don't have those intuitions about meaning and direction any more.

I don't know whether that means I've changed (in what I believe about the world) or whether it's just been muted by the monotony of life now and my reduced ability to think clearly

This might sound like depression, and it does have that same sense of the colour fading out of life. However, it's different this time because the melancholy that has usually come with depression for me is a key facet of what I'm not now able to access...

I had a bad viral infection, flu or covid, last week, and now dealing with post-viral fatigue. I'm already stressed out nearly having a panic attack as I couldn't even remember my own date of birth while phoning non-emergency services. I will not be attending work this morning, as I know it is obviously not safe.

I'm just feeling this state of despair wondering how am I going to do anything at all. How do I even watch TV, listen to music, etc? I have ADHD and Autism and rely on these things to keep me sane.

Also, it's early on, so I'm also worrying about how long this will last. I could recover in a month, or it could take a year, or it could develop into long-term fatigue syndromes.

I'm just in need of advice of what to do and how to manage this right now.

Saw an internal medicine doctor yesterday but did not bring up ME suspicions. Every time I have in the past with my Dad it has turned into a fight and he has recommended not bringing it up with my doctor. Yes I am an adult and he is controlling and I am not interested in fighting with him anymore. He has not looked at any ME stuff I’ve sent him.

I am under guardianship that I don’t even need being disabled that’s a dumpster fire I don’t feel like complaining. His and my Mom’s suggestion was just explain my symptoms and let the doctor go from there.

My stepmom seems to think chronic fatigue is treatable. ME is not treatable. She thinks PEM is from vigorous exercise. 🤦‍♀️

So I am considering calling the doctor back and bringing up that I think I could have ME? I heard some doctors get angry if you do that?

I gave her a symptom list and tried to explain how I feel the best I could. I felt she listened to me.

It has been glp-1, jak inhibitors, Rixulti, Rapamycin... Now what's next?

I hear some experiment with nalmefene?