The US ME/CFS Clinician Coalition
Twenty US ME/CFS experts came up with the recommendations.
Created in 2018 by a group of U.S. physicians, the US ME/CFS Clinician Coalition is dedicated to advancing best medical practices to medical providers on how to best diagnose and treat ME/CFS.
Since 2018, the word has gotten out and the Coalition has grown significantly, now containing 20 ME/CFS experts* who, collectively, have hundreds of years of experience treating ME/CFS patients.
Besides its recommendations on diagnosis and treatment, the Coalition’s beautiful website provides links to many resources including surgery and anesthesia, pregnancy, MCAS, disability, orthostatic intolerance, Ehlers Danlos Syndrome, work accommodations, etc. Links for courses for physicians, videos on PEM, exercise, severe ME/CFS, orthostatic intolerance, etc. are provided.
The Coalition is also an excellent resource for doctors treating long-COVID patients, and has put out a letter urging doctors to assess long-COVID patients in light of an ME/CFS diagnosis.
Treatment Recommendations for ME/CFS
In February, the Coalition released its treatment recommendations regarding drugs and non-drug approaches – but not covering supplements. The document is extensive but brief and to the point. It does not prioritize or rank treatments, but it does provide recommended drug doses and interesting insights are sprinkled throughout it. It’s a basic guide which does not cover treatment options for some comorbidities. Some resources on the website provide recommendations for those.
It’s provided here as a validated resource from top ME/CFS doctors in the U.S., which can be used to explore the different treatment options, check dosages and as an educational resource to give to one’s doctor.
Health Rising is also highlighting it, in part, to get input from the ME/CFS community. Is it missing anything? Could treatments be added?
Note that because this document was developed by a Coalition, it’s inherently quite conservative; i.e. it provides treatments that the entire Coalition could agree on. That probably cuts some treatments out. It’s no surprise, really, that Abilify didn’t make the cut – it’s just too new to the field.
Antivirals didn’t make it either. The document states that some experts are finding antiviral treatments efficacious, but apparently there was no consensus on antiviral use. Nor do any hormonal treatments – including thyroid – make the list. Hormone treatments form the backbone of some doctors’ practices, but they’re controversial. I was surprised, though, that no migraine drugs were recommended given their reportedly high incidence of migraine. One wonders if Ativan – a great temporary stress reliever – will make the list some day. The document does not, as noted above, include supplements.
Some interesting side notes are found. Once a day Lyrica causes fewer side effects, Trazodone may be the most effective sleep drug over time for sleep. Pyridostigmine (Mestinon) can particularly help with gut motility problems. The very low starting LDN doses for those who are sensitive to meds.
The entire document can be found in the attachment below or check out the recommendations in the blog below (the PDF may be easier to follow).
Please note that pictures and colors were added to the blog presentation.
Part 1. SUMMARY OF PHARMACOLOGICAL THERAPIES FOR ME/CFS
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| Medication | Dose | Comments on Usage |
| Fludrocortisone | 0.1-0.2 mg/day | For POTS, orthostatic intolerance, low blood pressure. May need potassium supplementation. |
| Low dose beta blockers | For POTS, tachycardia, high anxiety, hyperadrenergic states. For propranolol, start very low (5mg qAM). May increase fatigue. | |
| Atenolol | 25-50 mg qd | |
| Propranolol | 5-20 mg bid-tid | |
| Metoprolol ER | 12.5-50 mg qd | |
| Alpha-adrenergic agonists | ||
| Peripherally- acting Midodrine | 2.5-15 mg q 4 hours while upright | For orthostatic intolerance, low blood pressure, orthostatic hypotension, POTS. Start very low (2.5mg qAM) and adjust based on tolerance, response, and consider serial NASA Lean Testing. Check blood pressure response to medication, including supine blood pressure. |
| Centrally acting Methyldopa | 125-250 mg TID | For POTS, OI. May cause hypotension; headache; constipation; drowsiness. |
| Clonidine | 0.1-0.2 mg BID | For POTS, OI, hyperadrenergic POTS. Also useful as a mast cell stabilizer. |
| Guanfacine | 0.5-1 mg qd-BID | For POTS, OI, hyperadrenergic POTS. Also useful as a mast cell stabilizer. |
| Pyridostigmine | 30-60 mg q 4-8 hrs
ER 180 mg q am |
For NHM, POTS, orthostatic hypocapnia, dysautonomia especially with gut motility problems. Start with 15mg qd and titrate up. Use cautiously with midodrine, beta blockers, calcium channel blockers, ivabradine, and other cholinergic drugs such as metoclopramide and oxybutynin. |
| Desmopressin | 0.1-0.2 BID-TID | For orthostatic intolerance, POTS, OH. Useful in those whose nocturia disturbs their sleep when taken at night. Requires close monitoring of electrolytes and free fluid intake. |
| Ivabradine | 2.5-7.5 mg BID | For POTS. FDA indication only for CHF but works like a beta-blocker to reduce heart rate when beta blockers don’t work or are contraindicated. Expensive. Recommend consultation with cardiologist. |
| IV fluids/Normal Saline | For POTS and OI, tachycardia, hypotension. May be helpful for patients during relapse. May be helpful before and/or after surgery. | |
| Droxidopa | 100-600 mg TID | For POTS, OI. Difficult to get insurance coverage due to extremely high cost. Blood pressure must be followed closely, including supine pressure. |
Abbreviations:
- OI: Orthostatic intolerance
- POTS: postural orthostatic tachycardia syndrome
- NMH: neurally mediated hypotension
- CHF: chronic heart failure
Sleep Medications
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| Medication | Dose | Comments on Usage |
| Trazodone | 12.5-100 mg | Helps with disrupted sleep and can help sleep maintenance. May be the least likely to lose effectiveness for sleep. Can help with depression if that is also present. |
| Low dose tricyclic antidepressants | 5-100 mg (across TCAs) | For fibromyalgia, insomnia, sleep problems, chronic pain, and allergies. Can help with depression if that is also present. Low dose (25 mg or less) for sleep.
Higher doses (100 mg) if concomitant mood disorder. May worsen dry mouth, constipation, orthostatic intolerance, arrhythmias, or cause daytime sedation. Doxepin can stabilize mast cells. |
| Amitriptyline | 10–25 mg at bedtime | |
| Doxepin | 1-10 mg | |
| Mirtazapine | 7.5-15 mg nightly | Improves insomnia. |
| Anti-epileptics | ||
| Gabapentin
(see below for use in pain) |
100-1500 mg qhs | For sleep disrupted by pain, restless leg syndrome, fibromyalgia, periodic limb movement disorder, neuropathic pain. Start with 100 mg qhs and then increase the dose at night as tolerated. Once-daily formulations can have less side effects, daytime fatigue and less cognitive impairment but good pain control. |
| Pregabalin
(see below for use in pain) |
50-225 mg qhs | For fibromyalgia pain and sleep. Can be very sedating for some and can cause increased cognitive impairment and difficulty in tapering off. Once-daily formulations can have less side effects, daytime fatigue and less cognitive impairment but good pain control. |
| Clonazepam | 0.25-1 mg qhs | For non-restorative sleep, insomnia, anxiety. Highly effective for restless leg syndrome and myoclonus. Use low dose for restless leg syndrome. Can worsen fatigue and cognition and may cause addiction. Mast cell stabilizer. |
| Cyclobenzaprine | 5-10 mg qhs | For insomnia, muscle spasm/pain. May worsen dry mouth, constipation, orthostatic intolerance, or cause daytime sedation. |
| Zolpidem | 2.5-10 mg qhs | For insomnia, sleep initiation, less effective for sustained sleep. For short-term use. Short duration of action may lead to rebound insomnia. |
| Eszopiclone | 1, 2, or 3 mg qhs | For insomnia and sleep initiation. |
| Tizanidine | 2-8 mg q 6-8 hrs. | For muscle pain and insomnia from pain. May cause orthostatic intolerance. |
| Suvorexant | 10-20 mg qhs | For insomnia. |
| Topiramate | 25 mg | For sleep disrupted by pain, pain, migraines, neuropathic pain, PTSD, nightmares, sleep-related eating disorders. Start at 12.5-25 mg and build up slowly. Rash may portend Stevens-Johnson Syndrome. Specific blood work is recommended before initiating medication. Check drug information. |
| Hydroxyzine | 25 mg | Sedating. An H1 blocker that may also be helpful for mast cell activation syndrome. Helps anxiety, reduces nocturia. |
| Alpha blockers | For sleep and also may be helpful for mast cell activation syndrome and hyperadrenergic POTS. | |
| Clonidine | 0.1-0.2 mg | |
| Guanfacine | 1-2 mg | |
| Prazosin | 1-6 mg | |
| Diphenhydramine | 25 mg | Take at bedtime or 30-60 minutes before. Can have anticholinergic side effects. |
Abbreviations:
POTS: postural orthostatic tachycardia syndrome
(1) Sleep medications with long duration of action are often better tolerated if taken 1-2 hours before bedtime.
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| Medication | Dose | Comments on Usage |
| Methylphenidate | 5-20 mg up to TID | For difficulty concentrating and other cognitive issues, daytime sleepiness and for some with orthostatic intolerance or orthostatic hypotension. BID dosing may avoid insomnia. Moderate to marked benefit anecdotally but tolerance develops if used daily; may be habituating. Ensure that cardiovascular risk is assessed appropriately. |
| Modafinil | 100-200 mg qd | For somnolence, cognitive/fog, daytime fatigue. Start with a small dose and increase slowly to the most effective dose. Can disrupt sleep. Stimulants most helpful when anxiety scores are low and the Epworth Sleepiness Scale is greater than 10. |
| Armodafinil | 150-250 mg qd | |
| Amantadine | 100 mg once or twice daily | May help mild to moderate fatigue. May interact with psychiatric medications. |
Pain Medications
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| Medication | Dose | Comments on Usage |
| Low dose naltrexone | 0.5 – 6 mg compounded usually taken at night | For widespread pain of fibromyalgia. Anecdotal reports of improvements in sleep and brain fog/cognitive dysfunction. May not improve joint pain or headache. Start at a dose that causes no side effects and titrate up slowly as tolerated. If sleep disruption is persistent when taken at night, may change to AM dosing. Recommend a 4 month trial. For those patients sensitive to many medications, start at 0.1- 0.5 mg. |
| Serotonin norepinephrine reuptake Inhibitor | For fibromyalgia and those with widespread pain, depression, insomnia. May increase sweating, blood pressure or heart rate. | |
| Duloxetine | 20–60 mg | |
| Milnacipran | 25-100 mg BID | |
| Anti-epileptics | ||
| Gabapentin (see above for use in sleep) | 100–600 mg TID | For sleep disrupted by pain, restless leg syndrome, anxiety, fibromyalgia, periodic limb movement disorder, and neuropathic pain. Can dose up to 2400-3600 mg/day in divided doses. Beyond 1800 mg, pregabalin may be more effective and less expensive. |
| Pregabalin (see above for use in sleep) | 50-225 mg twice daily | FDA dosage is 150 to 225 mg twice daily, but lower doses are also used. For fibromyalgia, pain and sleep. Sedation or dizziness may be limiting side effects. |
| Muscle Relaxants | ||
| Cyclobenzaprine | 5-10 mg | For insomnia, muscle spasm/pain. May worsen dry mouth, constipation, orthostatic intolerance, or cause daytime sedation. |
| Tizanidine | 2-8 mg q 8 hours | For fibromyalgia, spasm, and pain relief. May cause orthostatic hypotension and sleepiness. |
| Baclofen | 5-10 mg TID | For muscle spasms and cramping. |
| Medical marijuana | For neuropathic pain, nausea, irritable bowel syndrome, insomnia. Dosing is hard to determine and there can be problems with product variability. Check local laws. | |
| Nonsteroidal anti inflammatory drugs | ||
| Celecoxib | 100-200 mg qd | For joint or muscle pain. Can also be very helpful for brain fog and for mast cell activation syndrome. |
| Meloxicam | Per package insert, may exacerbate gastritis or reduce renal function. When these work, may suggest unappreciated rheumatologic disorder. | |
| Diclofenac (topical also) | For joint pain. | |
| Naproxen | ||
| Acetaminophen | 500-1000 mg prn 8 hrly | May not be effective. Concerns with liver toxicity. |
| Amitriptyline | 10 to 50 mg nightly | Amitriptyline is an old standard for fibromyalgia pain. Other tricyclics may be helpful. |
| Tramadol | 50-100 mg every 6 to 8 hours | Opiates are usually to be avoided but may be necessary, in which case tramadol could be the first choice. Can be effective for more than just pain. Small risk of seizures when used with other serotonergic drugs. Note: Other short acting, low dose opioids can be useful, used sparingly PRN, for ME/CFS symptoms. |
Immune Dysfunction
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| Medication | Dose | Comments on Usage |
| Intravenous immunoglobulin | 400 mg/kg q
monthly |
For common variable immune deficiency (CVID), low IgG, low IgA, ParvoB19 antibodies, recurrent infections. Best done in consultation with an immunologist to determine most appropriate therapy. An immunologist can help facilitate insurance coverage. Go slow and always use premeds to reduce side effects, particularly in patients with mast cell activation syndrome. Often divide dosing to q 1- 2 weeks. Insurance may require documented poor response to pneumovax. |
| Subcutaneous gamma globulin | 10-25 gm/month | |
| Inosine pranobex (Isoprinosin) | 500 mg, 3 tabs daily weekdays to start | For frequent viral infections, herpes simplex outbreaks, low natural killer cell activity, sore throat, tender nodes, low grade fevers. Dose is 500mg, 3 tabs daily weekdays for 3 months, then one tab BID for maintenance. May be hard to access. Alternative is inosine, available online. |
| Hydroxychloroquine | 200 mg BID | For autoantibodies, autoimmune issues, joint pain and positive antinuclear antibody (ANA) test, severe arthralgia/myalgia. Eye exam should be performed at baseline and after 6 months. It can take at least 3 months before an effect is seen. |
Suspected Small Intestinal Bacterial
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| Medication | Dose | Comments on Usage |
| Rifaximin, metronidazole, doxycycline, | According to label | For proven or suspected small intestinal bacterial overgrowth. Neomycin has a risk of ototoxicity. |
Overgrowth
| amoxicillin-clavulonic acid, sometimes oral vancomycin, rarely neomycin | Address motility, gastroparesis, and leaky gut issues if present | |
Part 2. SUMMARY OF NON-PHARMACOLOGICAL THERAPIES FOR ME/CFS
Post-exertional Malaise (PEM) and Fatigue |
| Pacing of physical and cognitive activity to conserve energy and minimize post exertional malaise (1). Once the patient has achieved a stable baseline using pacing, then very carefully selected and individualized increases in activity can be undertaken. The type of activity must be tailored for the patient’s level of severity and to ensure the activity does not trigger post-exertional malaise. |
| Assistive devices, such as a motorized scooter, wheelchair, walker with seat/basket, shower chair, handicap parking sticker, audio recorders and recording pens, etc. when needed to conserve energy. |
| Home health aides for those who are more severely ill. |
| Ear plugs, eye masks, and sunglasses, blue light filters, perfume free environments, etc. to decrease sensory stimulation. May need to maintain low sensory environment for most severely ill. |
| School or work accommodations such as flexible hours, shortened days, periodic breaks and place to lay down during breaks, lighting and other environmental modifications to avoid sensory overload and conserve energy. |
Orthostatic Intolerance |
| Salt, fluid loading, electrolytes, IV saline. Sodium intake should be complemented with modest potassium, magnesium supplements. Camelbacks for hydration. |
| Compression stockings or abdominal binder. |
| Positional changes: Avoid prolonged sitting or standing. Knees higher than hips. Sit on legs so legs are not hanging down. |
| Consistent, carefully tailored exercise, as long as the patient can do so without triggering PEM. May need to do exercise lying down, seated, or in water. |
| Treat comorbidities that may contribute to orthostatic intolerance. |
Sleep Issues |
| Sleep hygiene practices are a part of treatment but may be marginally effective in most patients. Recommendations may need to be tailored for bedbound patients and those who need to be recumbent to minimize symptoms such as orthostatic intolerance. |
| Meditation and relaxation exercises. |
| Ear plugs and eye mask. |
| Light therapy. Retimer Light therapy glasses. Sunlight for 15 minutes upon waking. |
| Blue light filters to filter out blue light from phones and computers. |
Gastrointestinal Issues |
| Healthy, varied diet low in processed food. Dietary changes and elimination of certain foods that provoke symptoms. Many patients do better avoiding foods such as caffeine, alcohol, spicy foods, aspartame, sugar, possibly dairy and gluten. |
Cognitive Dysfunction |
| Cognitive pacing (e.g. only focus on one task at a time, limit reading time). |
| Simple memory aids (e.g. calendar reminder systems, notes, etc.). |
| Positional changes: Perform cognitive functions lying down and stay hydrated if orthostatic intolerance is a problem. |
| Caffeine or short acting stimulants if well tolerated. |
Pain |
| Pacing to avoid flare up of pain. |
| Hot or cold packs as needed to relieve the specific source of pain. |
| Physical therapy, Massage, Myofascial release, Acupuncture, Dry needling of trigger points. |
| Chiropractic treatments. |
| Meditation and relaxation. |
| Neurofeedback techniques may be helpful. |
<1) Campbell, B. Pacing Tutorial.
*Coalition Members include:
Dr. Lucinda Bateman – Internal Medicine, UT
Dr. Alison Bested – Hematological Pathology, FL
Dr. Hector Bonilla – Internal Med, Infectious Disease, CA
Dr. Charles Lapp – Internal Medicine, Pediatrics, NC
Dr. Bela Chheda – Internal Med, Infectious Disease, CA
Dr. Jennifer Curtin – Internal Medicine, CA
Dr. Tania Dempsey – Internal Medicine, NY
Dr. Theresa Dowell – Family Nurse Practitioner, AZ
Dr. Donna Felsenstein – Infectious Disease, MA
Dr. David Kaufman – Internal Medicine, CA
Dr. Nancy Klimas – Immunology, FL
Dr. Anthony Komaroff – Internal Medicine, MA
Dr. Susan Levine – Infectious Disease, NY
Dr. Benjamin Natelson – Neurology, NY
Dr. Daniel Peterson – Internal Medicine, NV
Dr. Richard Podell – Internal Medicine, NJ
Dr. Irma Rey – Internal & Environmental Medicine, FL
Dr. Ilene Ruhoy – Neurology, NY
Dr. Ronald Tompkins – Surgery, MA
Dr. Maria Vera-Nunez – Internal & Integrative Med, SC
Dr. Brayden Yellman – Rheumatology, UT
Yes it’s a brilliant website, I often direct pwME and doctors there
Wow – this is a great step forward! Thank you for posting this Cort.
My first, quick reaction: I’m VERY happy to see reference to the medication intolerance many ME/CFS patients have, and the caution to start at very low doses.
My physician doesn’t believe me when I mention this – he thinks I’m crazy. Also, the reference to reactions to fillers – that’s also helpful.
I’m surprised to not see any discussion of, or recommendations for, MCAD/MCAS, other than noting clonazepam as a Mast Cell Stabilizer. Why mention mast cell stabilization and not mention MCAS? Unless I’m missing something elsewhere in the document – that’s entirely possible.
Nor is there any mention of the most common comorbidities (or causes?) such as chronic EBV. Noted: you did say they didn’t recommend anti-virals, but still…
Your point about supplements is very valid – hopefully the group can be convinced to include those very soon. Especially Vitamin B1 – my experience with that lately has been very positive; it’s pretty much eliminated (so far) the need for all the things I was using for what I thought was SIBO & especially low motility.
Also, I didn’t see melatonin discussed as a sleep aid – again, noting that supplements weren’t included. Melatonin has done wonders for me (titrated up very slowly, of course) and has allowed me to cut down my sleeping pills by half.
I don’t know who was behind this initiative, but it’s very welcome – thank you to all involved.
They mention that doxepin and a couple others have mast cell stabilizing factors and they don’t separate out MCAS. I was a bit surprised not to see standard h1/h2 blockers on the list.
The one sleep item that I would add would be high THC cannabis. It works wonders for me with little after-effects. I probably use it once a week or so. Some Cannabis is also reportedly good for cognition – haven’t tried that yet.
Court, I’m learning that it may be more of a mast cell mediator disorder (MCMD), as opposed to just mcas. My Dr said it’s more of a dysfunction than just activation. I think that is pretty new, too. Sounds like it’s really complicated and they still haven’t figured out all the ins and outs of mast cell activity, mediators and the by-products of degranulation that may be at play. Here is an article on the topic that, admittedly, I have not made it all the way through yet. Cognitive pacing…….?
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7003574/
Sorry, autocorrect! Cort! Not Court!
Yes! The winning combo of drugs for me is naltrexone and famotidine (an H2 blocker). I don’t take these daily as they have very potent but therapeutic effect for me. Naltrexone is like pushing the accelerator, and famotidine is like pumping the brakes. I too was surprised not to see famotidine or any others in its class.
@Wendy: thanks for posting that link. I just started to read it and already learned plenty. This paper will be a keeper and help us further!
I’ve tried various combinations of CBD/THC drops and even at lower dosage I get horrible vivid nightmares. I’m exhausted. Same with meds like trazadone. I have ME/FM with complex PTSD. Any suggestions? Thanks
Kathryn Larouche Imler, I use cannabis topically. I can’t ingest it as thc does not work with my brain – can’t stand it – and cbd alone builds up pressure in my head and causes migraines.
So I use a high cbd:thc oil 1:1 topically to release neck, shoulder, back tension and for any other weird aches and pains. I have FM. It works within 2 minutes and is amazing. But of course that doesn’t get into the bloodstream so only works for relaxing muscles and other weird pains that pops up.
Thank you, Cort, as always. Because of Covid-19 long-haulers my doctor
has finally come around to reading your blog. She wants to put me on high does L’lysine, but I’m curious about thiamine and B-1. Treatment is somewhat in the dark here in Toronto, Canada. I would like to share that Gabapentin cream has been effective for pain. Especially my neck and shoulders. And after a short period of lucid dreams with Trazadone, it’s working. I’m on 50mgs, but I take 1.5 mgs Lorazepam with it. And I sleep!
Sleep! How much better we would all be if we could get good sleep!
Sorry, I take some of my above comments back. I didn’t notice the link for the other pdf, which nicely lists most of the things I’d mentioned above.
(Note: I’m commenting here instead of replying to my comment above, since my comments are still in moderation limbo and I can’t access it. Q: How long did you say issie and dejurgen experienced this?)
@Anne, hahaha, Issie and Dejurgen STILL experirnce this. If we put too many links of reference in or if we comment tooooooo much – it will kick us out. The other day, I changed my comment at least 5 ways and it kept saying it posted my comment, but it wasn’t there. So Dejurgen put in what we were trying to say. I rebooted my phone and tried it in a different place, and it took it. (We posted at the exact same moment..) So sometimes, its patience and wills…..will the computer win or will we. Cort, gets on the moderation things pretty quick … so it usually doesn’t take more than a day or two for him to get it worked out.
Nicely done. I really didn’t expect much, but having been a veteran of ME for three decades I have tried most of the recommendations and can say that I am still being helped by many.
Thanks, Cort. You’re one helluva resource. ?
Nice to hear that some things are helping – and thanks 🙂
Does anyone know what’s up with the parvo/ IVIG link? I have parvo antibodies and have tried to get IVIG before (after reading about it for me/cfs, nothing to do w parvo) but there’s not a snowballs chance in hell my insurance was covering it- unless they do cover it if you have parvo antibodies for some reason?
Alisa,
Would you like to share what works for you?
Thanks in advance.
Alisa, can you share what you’ve taken and what has helped? Inquiring mind wants to know.
Linda, George Matyas our accomplished 25 year old son, also in Toronto. Post viral fatigue fall 2020, (not sure which virus caused it – though started with bade cold). May 2021 huge crash, totally beridden and debilitated, needs 24/7 care..
HELP,HELP. Nothing being done (mount Sinai diagnosed CFS and sent home. A neurologist appointment at Women’s College in 4 months if lucky.) Do you anyone who treats CFS? Whos is your doctor? I feel CFS treated like leprocy.
Who are the twenty doctors who put this together?
Whoops – I forgot to put them in. Thanks for the reminder. They are now at the bottom below the recommendations. They include a couple of doctors I haven’t heard of before – a nice sign.
I would like to see added that ME/CFS is specifically not psychosomatic, and that psychological approaches only be offered as supportive care and not as a treatment.
I’m sure that’s what is intended. Given how many treatments are presented there’s clearly no one thing for ME/CFS – and there won’t be until the chief factor (hopefully there is one) is clarified and targeted.
Thank you for this, Cort. This is an exciting step forward, as is seeing that there are now 20 doctors treating ME/CFS/FM. Surely some day there will be at least ONE in each state. Still a major shortage but this is a start & I think with this Long COVID we will see more interest.
I want to mention that I do use glutathione (compounded) & it is somewhat helpful.
LDN is the best I have found for Fibro pain. Not perfect but does a good job most of the time.
Too bad no supps made the list. K-Pax Pharmaceuticals Immune Support has helped me quite a bit. I was diagnosed with ME/Fibro about 12 years ago by a physician who knew it is real and understood how debilitating it is.
Glad to hear about K-Pax. I think Jon Kaiser’s ideas are really interesting. The formulation did well in a open-label GWI trial and, if not for the unexpectedly big placebo response, might have done well in an ME/CFS trial.
Very glad there is something out there now to help direct providers on appropriate care for ME/CFS/FM! I think it can help legitimize our suffering and serve as much needed education to providers that might otherwise shrug us off as being hypochondriacs and malingerers.
A comment on hormones, aka female hormones. They have been extremely important for me as I found that hormonal swings were triggering my most severe crashes. It took some time to find the right hormone therapy for me to stabilize things as much as possible. Also helpful for migraines r/t hormonal swings, which I have had since I was a teenager. I recall reading something about perimenopause seeming to have some correlation with CFS, so I think at the very least, fluctuating female sex hormones should be considered in therapy.
Surprisingly not a whole lot on mast cell stabilizers on the list. The ones listed were there as really secondary affects of meds used for other things. My CFS specialist and I are honing in on mast cell dysfunction after having some success with gastrocrom/cromolyn sodium (I crash less after eating) and montelukast (helps me breathe better at night so I can sleep). While trying to relax and focus on breathing to fall asleep, I realized that I was breathing very shallowly and it was effortful. The more I relaxed, the worse it got and I would have to start deep breathing as I feel like I was suffocating. My usual asthma inhalers were not working. Montelukast was like a miracle for that, suggesting a mast cell issue as the offender. So, now have also added ketotefin (oral, made by compounding pharmacy), dextromethorphan and zyrtec (can’t think of the generic name). Seems like mast cell dysfunction has been a more recent focus overall -?
Also surprised at the lack of focus on migraines, but was happy that RLS was mentioned at least once!
As for non-pharmacological approaches, let’s hear it for there NOT being GET or CBT in there! Progress!
One non-pharmacological therapy that many sufferers have been having some success with is neural retraining, utilizing the concept of neuroplasticity (NOT CBT). The focus is on retraining the limbic system to stop overreacting and “protecting” us from the benign stimuli we encounter that it deems life threatening.
I understand craniocervical instability is common and there are non-pharm therapies for that, including some neck traction.
Vagal nerve stimulation seems to be another emerging concept. I am currently dunking my head in ice water in the AM. Yes, I said head in ice water. Not my favorite thing, but I’ll do just about anything that might help!
It’s a start and a step in the right direction, but much more work to be done. So complex and still so much trial and error!
I think you might be on to something, Wendy, with the head dunking in ice water. Sometimes my eyes would feel uncomfortable to the point of distraction, maybe caused by undesirable nerve activity, who knows. A couple of years ago I decided to apply ice cubes to my eyes for as long as I could tolerate. The discomfort would then vanish quickly. I started doing same on my forehead and face. It’s definitely a pick me up. What you are doing kind of sounds related to the Wim Hof (the iceman) Method of cold exposure.
@Wendy, you may like this thread on MCAS and a controversial approach to treating it. I have severe MCAS that has put me in ICU and am seldom using antihistamines. I’m trying to reset my Histamine 2 Receptors. (H2R). There is a link to a book of a doctor who treated his patients by adding a small trigger of histamine to try to get the H2R to activate. The H2R turns on “Helper T cells” and moderates the release of histamine from the H1R. The book is VERY technical. But it made sense to me. I used antihistamines daily for 8 years. It caused me to have cognitive issues and when they wore off rebound was really bad. Now paying close attention to diet (low histamine, oxylate, lectins, nightshade, grains) and using some supplements and I’m as good as I ever was on those. I do occasionally have to use GastroCrom and if real bad a child’s liquid Allegra. But NOT an H2R blocker. And anything you use up from that blocks what is below. So an H3R would block (somewhat) H1R and H2R. This will help you understand what the receptors do and why histamine is so important in our immune system. It is being used to treat Alzheimer’s, PARKINSON, MS and narcolepsy. We need it, just not too much of it and also not all the other things being “dumped” too much either. I use a “fake” out to cause my H2R to trigger. And then my own body mast cells don’t over degranulate. Homeostasis is key.
I definitely feel MCAS is a key player with us. And until I addressed it, my POTS didn’t get better. There is also a tie in to too much glutamate. Dejurgen and I have written on this a good bit. A search will being some of that up.
The article you listed above is fascinating too. I want to look into it further. I have an idea that may connect, I’ll have to look into it.
Guess I should put the link to that thread.
https://www.healthrising.org/forums/threads/mast-cell-histamine-immunotherapy-with-histamine.6233/
I know somebody for whom estrogen therapy not only improved but absolutely wiped out a 10/10 migraine pain that had lasted for over a year. Incredibly powerful substance when used correctly. Gordon Broderick’s modeling work suggests hormones – particularly female hormones – play a major role in these diseases. (Testosterone is thought to be protective).
If this CDC study is right a very high rate of gynecological disorders are present in ME/CFS. The multisite ME/CFS experts study could really help us out with this.
https://www.healthrising.org/blog/2015/05/06/high-rates-of-gynecological-disorders-implicated-in-chronic-fatigue-syndrome-and-fibromyalgia/ –
Hey Cort,…Excellent amount of information you put together!…It’s a great head start for helping FM, ME/CFS sufferers and hopefully our medical research community will look into supplements for the long term protocol…I’ve been looking into herbs and plants as well as supplements that could help…It might not be a quick solution, but in time, the right holistic menu could bring about a healthier situation that has the body doctoring itself…
Sweet! My doc, Dr Yellman, is on the list, as is his mentor, Dr Bateman. I feel SO blessed to have them in my corner. I know SO many have had terrible experiences.
A very long list of drugs used in the main stream medicine approach to ME/CFS, which treats symptoms and does not cure the disease. The symptom control approach is certainly beneficial in many cases but it does not address the root causes of ME/CFS and will not provide cure in most cases. This approach is not successful in treating most chronic diseases either. Healh-Rising should give more attention to integrative approaches, there is also good research being done in this area. The non-pharrmacological part presented here is only very small, but should be bigger than the pharmacological one!
In the vast number of years my daughter has been ill, I can say she has tried 85% of the items on this list. Such familiar names. Side effects were common, and then the meds would be one after the other abandoned as they really did not solve any problems. Tramadol was great for acute pain. Baclofen also. But the rest really did not help. It’s great that this list is compiled but to tell the truth it is really a summary of what CFS doctors have been trying on their patients for 2 or 3 decades. The core problem of this illness is: exertion intolerance. And not one of these meds touches that. And until this day we still do not know what causes this exertion intolerance. And it is shocking that this is still the case. The other problem is that many doctors do not understand PEM. They say: oh, you get tired. No, PEM is not fatigue, it is a horrific malaise. Thanks for your hard work Cort. You are a real angel. And this list was a trip down memory lane–running from one doctor to the next seeking help for a very sick daughter. Best wishes.
I agree @Perrier & Stefen, I have tried near everything too. And so much of it was sooooooo wrong for my subset.
As some others have said, only Tramadol (and a very low dose 1/4 of 50 mg and rotated on and off and only when really bad) and a Bentyl (low dose muscle relaxer, normally used for IBS) this combo for POTS has been the best meds I’ve used. I don’t use often now, only when really bad. And I don’t increase dose too high, lest it stops working.
I have found alternative supplements to be my best helps. Its sad that few are even mentioned here. As those may assist in not just covering over symptoms, but actually “fixing” core issues and bringing the body back into homeostasis. We do need our “purple ? bandaids”, but if they can do more than just cover over the booboo, that’s even better.
I agree Stefan. If there’s any slant in particular you recommend please let me know.
I’d really like to see a mention of genetic testing. My tests from Real Time Labs in TX confirmed some detox pathway issues which I had already suspected because taking Vit B12 above 50mcg causes fatigue and that I need more riboflavin and maybe molybdenum. I’m experimenting now to see if I can determine if it’s Vit B1 or Vit B2 that I need high doses of to function since I’ve been taking both at 200mg/day for the past year. The amount of useful info in the testing is very helpful in that it tells you which drugs to avoid and what foods and supplements might be helpful!
Personalized medicine definitely the way to go ultimately. Good luck!
Stefan, I am in total agreement. You can’t cure an illness if you don’t know the cause.
In my field, birth defects, every birth defect has a cause and our goal is to identify these causes for better treatment and prevention.
In our birth defect work, we have linked a rare pattern of birth defects to the father’s service and exposures during the first Gulf War. This link was confirmed by a DOD study.
Because of this research, we are aware of the many toxic exposures veterans had during and even before their deployment.
The parallels between Gulf War Syndrome and at least a subset of ME/CFS cases is remarkable.
Since I had an exposure to one of the pesticides of concern in GW Syndrome, I have explored the treatment options being tried by researchers funded by the Department of Defense. (None of these was mentioned in the article on testing and treatment.)
The DOD is rather clear that they believe GW Syndrome is linked to toxic exposures during deployment.
Why aren’t toxic exposures being explored in research on ME/CFS? It is not like any of us live in a vacuum. Increasingly, our water and air is polluted. Homes, offices and yards are treated with pesticides. Many communities are near toxic dump sites where drinking water and private wells are contaminated.
It is possible to test for exposures to the most long lasting chemicals with a mass spectrometer and gas chromatograph. (Read: The Poisoning of Michigan by Joyce Eggerton)
I had such a test done and learned that I have a high body burden of xylene, a solvent used in the pesticide I was exposed to.
What to do now? That is a tough one because detoxification can be very dangerous if your methylation system is compromised because of your genetic makeup (mine is).
But, I believe in this country of creative thinkers, we could come up with answers if only the focus was in the right area.
It is a waste of funding to keep describing symptoms…so what?
Why? That is the key to everything.
Proof Chronic Fatigue Syndrome not psychsomatic
Media release from the University of Otago
Thursday 10 December 2020, 02:51 PM
4 minutes to Read
Emeritus professor Warren Tate and Dr Aniruddha Chatterjee
University of Otago researchers Warren Tate and Aniruddha Chatterjee
University of Otago researchers have “unequivocally proved” – contrary to the long-held belief of some health practitioners – that Myalgic Encephalamyelitis/Chronic Fatigue Syndrome is not psychosomatic.
“By using cutting edge sequencing technology for analysis, we discovered changes in the dynamic epigenetic code that could explain why ME/CFS patients function at a much lower level than their healthy peers. We also found changes that explain many of the neurological symptoms as the study highlighted genes involved in a part of the brain called the hypothalamus and subsequently a pathway that leads to the production of the body’s main stress hormone, cortisol. Low cortisol in CFS patients can lead also to low energy, and fatigue.”
For Professor Tate, the research is deeply personal and the findings the culmination of long experience with the disease.
“Following a bout of glandular fever, my then 14-year-old daughter had a sudden dramatic decline in health that today we know resulted from the onset of ME/CFS. As a family we have lived with this ongoing illness now for 30 years.
Brilliant post Betty. Many valuable points highlighted. Thank you
I certainly understand how incredibly frustrating it is trying med after med, treatment after treatment and some a bit whacky but we are so desperate to feel better, to have a day without pain, really good quality sleep and energy during the day. Nothing has really worked for me either. According to my genetics I metabolize most medications too fast and I never get the full benefit of any of them.
Cort–
Terrific job, as usual. But there seem to be some missing words at the beginning of the article:
“hundreds of years of experience treating ME/CFS patients. It provides
Besides its recommendations on diagnosis and treatment, the Coalition’s”
I think that was just a boo-boo 🙂
What has happened to real pain meds? I have been in this “fight” for nearly 20 years and have tried many/most of the suggested meds/supplements and have only gotten any relief from opioids(along with supplements, etc)!! Pain meds in the hands of a knowledgeable physician and a cooperative patient can and should be prescribed for pain that isn’t helped by other things! My quality of life is so much worse now…I am taking Aleve and some cream and doing exercises( which by the way really exacerbates my CFS/ME/CFIDS). I am frightened for what lies ahead for me!!!!
Lisa, I feel so sad to read of your pain issues going unaddressed. I hope you will back off on any exercises that exacerbate your ME/CFS symptoms. Pacing and staying away from anything that exacerbate my symptoms are probably the most important things in my regimen to maintain as high a quality of life as possible.
Pain. Imipramine, magnesium and low dose neltrexone have been great for pain for me. Peace
The only one mentioned was tramadol but certainly other more powerful opioids are used. Remember that this is a pretty conservative – it had to be agreed up on by a wide range of practitioners, some using quite different approaches.
I imagine that Dr. Holtorf, for instance, would have loved to have hormonal treatments recommended and Dr. Peterson certainly has had good results from antivirals in the right patient.
Just a note. Opiates (and other pain meds) can cause issues with MCAS. Tramadol is the lest problematic of these. Some other type pain meds, can cause mast cell degranulation.
For those with menopause symptoms, I found red clover to be a big help. It helps hot flashes and to increase bone density. I react to soy, very badly, and this was my go to. I also found that estriol transdermal cream was helpful. It is also a protection of cancer. I wasn’t to increase estrogen after my hysterectomy at age 36. But these milder things, got me through a most horrible, too soon, menopause. (I also question if we all don’t have issues with being estrogen dominant. That includes for guys. Too much of the wrong type of estrogen. There are 3 kinds. Balance between hormones being key.)
Supplements have made a big difference for me by mitigating symptoms. So, I wish that they could have covered the use of them. At the very least, a vitamin-mineral supplement. Vitamin-mineral supplements have always made a big difference in how I feel and with energy levels. In most cases, I suspect that the use of supplements is an individualized strategy as each person would have different needs. And, in some cases, present comorbidities would have an effect on what could be used. For example, I cannot use CoQ10 in brain oil. It took a few months to find one that used olive oil. I have also been unable to find a NAC product I can use, for the same reason.
A lot of practitioners do use supplements. It is a big field with not a lot of study unfortunately. It would great, though, to see the Coalition come out with a list of basic supplements – and then maybe a list of supplements to try. Let’s hope.
Really appreciated this! I’m glad these are respected physicians within mainstream medicine who list a consensus of traditional therapies. We desperately need to reach our mainstream doctors. I’m not discounting alternative medicine, but had the list of therapies included a long list different supplements and alternative approaches, this coalition might not get the ear of the audience we need to win most.
I’m glad LDN is on the list as it’s the single most helpful medication I take for pain. I was also glad to see the warning of using Neomycin for SIBO. I’m being currently treated with rifaximin and my new GI doc refused to add it when I asked, stating the same reasons. This boosted my confidence in my doctor.
It was surprising to see the subcutaneous use of IGG listed. In the early years of my CFS – 35 years ago, my doctor agreed to writing a script for IM IGG which I continued for 2 years. I’m convinced it prevented me from remaining bedbound indefinitely. I hope this new website gains a lot of attention.
Hi Cort, you said a couple of times supplements are not included. Given the interest in them evident from the comments, do you have any info/thought/opinions on why? Are they going to be dealt with in the next instalment or something?
I don’t know if they will or why they were not. It is a big field without much study unfortunately. It’s easier to recommend something if you have evidence based data on it. Sometimes it’s also just a function of time and energy – everyone is busy and you can only cover so much at a time. I think supplement recommendations are probably the biggest wish from the comments. I really hope they come out with a basic supplement and a list of top supplements to try. Certainly many of the doctors on the list use them.
There are no studies backing up the use of the medicines on the list in Me/CFs either, yet they feel comfortable recommending those…. (shrug emoji)
We do expound a lot on the lack of clinical trials in ME/CFS but some of these have actually been studied (whether well or not) in ME/CFS – the stimulants (https://pubmed.ncbi.nlm.nih.gov/23062791/, https://pubmed.ncbi.nlm.nih.gov/27351244/, https://pubmed.ncbi.nlm.nih.gov/33753384/), antivirals actually (although they did not recommend them), fludrocortisone, propanolol (https://pubmed.ncbi.nlm.nih.gov/17517256/), midodrine (https://pubmed.ncbi.nlm.nih.gov/15082846/), IVIG (https://pubmed.ncbi.nlm.nih.gov/12715326/) plus the pain meds (Lyrica, Gabapentin, Duloxetine) and others (LDN) have been studied in FM – a closely related illness. The drugs for orthostatic intolerance have all been studied in POTS- a common occurring condition in ME/CFS.
Because drug companies can’t make enough money off of supplements they can’t justify those trials. Teitelbaum’s study did suggest that D-RIbose could help in ME/CFS/FM and I’m sure some others have been done.
I think this is why the communities have such value, since we are the collective clinical trials, and we are our own walking experiments. What chagrins me is that there isn’t one treatment that works for everyone the same. Even if we end up with all the Bs on board, the order in which we have to take them and dosing can be different. It’s up to each individual to experiement, and pay close attention to how their bodies respond.
We also have hyperadrenergic POTS that doesn’t have any agreed upon treatment (published papers say exactly this, Satish Raj). Hydration salts often don’t work as well in this group because of the salt.
I think most of us, if not all, with hyperPOTS initially had neurogenic POTS with the orthostatic hypotension, and as we got worse, it developed into hyperPOTS, with both the hypo and hypertension (and bradychardia too).
You will find that many with this ‘incurable’ POTS got rid of theirs with B vitamins. If you think of dysautonomia as a mitochondrial dysfunction (instead of simply an overactive sympathetic system), then you can start thinking of different ways to address problems.
Before I learned of the word dysautonomia, I thought of my ‘episodes’ as low potassium and hypoglycemia. That did more properly points towards the mechanism of what is happening and led to finding ways to address it (pro-metabolic diet, etc).
Those using medicines – their mitochondrial dysfunction, oxidative stress, lipid peroxidation, tissue catabolism and degenerative processes are still raging on.
We also know about how pain meds just don’t work in hEDS (but things like adressing ‘MCAS’ does).
Financial interests intersecting with health does seem like a bad model…
If we wait around for the medical system to do something… we be toast.
Those that recover significant health and function, I have noticed, take matters into their own hands (and tend to have greatb support system around them, family/friends..s)
I have learned and benefitted from the collective wisdom through out the nets, HelathrRising included 😉
That little bit on all the Bs from an interview with Naviaux was my saving grace.
Thank you Cort!
Thank you for your work and advocacy Cort
I would like to see more work done on hormonal supplementation.
Post menopausal I have ground to a halt.
I have been prescribed estrogen cream twice a week and it has made a bit of a difference to my fatigue. I notice the difference especially the day following I apply it.
Thanks for mentioning that.
I’m very glad they included Bruce Campbell’s Pacing Tutorial.That and his website are full of helpful non-medication informatio shared by many.
http://www.cfsselfhelp.org/pacing-tutorial
I would also add in the very important information shared by the Workwell Foundation on managing heartrates and PEM. All their you tube and other videos indicate broken systems with their 2 day CardiopulmanaryExerciseTesting (CPET).
https://www.youtube.com/watch?v=XFz4CK0Js1M
For those who of us cannot or should not do CPET their advice pages for that and PEM are crucial for thoseof us who struggle to understand what appears to be random symptoms.
https://workwellfoundation.org/resources/
The Workwell Foundation has certainly facilitated my understanding of how to to feel better and my energies and improve my ability to carefully add a bit more to my days.
Combininb their information with Bruce Campbell’s pacing tutorial is a win-in combination for me.
I do not understand why the Coalition does not have 2 day CPET test as Tier 1 recommendation for diagnosis. Until mainstream doctors diagnose ME/CFS, I don’t see much changing. If they first look for PEM, the rest will fall into place. They will not disbelieve the 2 day CPET. Can we get our organizations to petition NIH, CDC and hospitals to get this test available?
I understand that this test may be needed for disability reasons. Staci Stevens does say words to mean that it obviously sets up PEM in a big way. I personally would avoid taking that second day in particular if I didn’t need to. I’ve had PEM so badly that I lost nearly a year before I was back to where I was before I overdid it.
Has anyone had personal experience with Clonidine taken at night for sleep? I’m particularly interested in whether or not it can sustain and extend sleep during wired and tired episodes.
I’m currently alternating between Trazodone-Melatonin and Clonazepam-Doxepin, but both combos have become less effective over time. Everything else I’ve tried either doesn’t work at all or only helps sleep initiation, often at the expense of sleep quality (e.g. hypnotics, Mirtazapine, Suvorexant, THC, antihistamines, Quetiapine, other sleep supplements).
How about Naviaux thoughts on using vitamin Bs? I have regained a lot of functioning with them (and minerals, through diet and supplemental as needed). And staved of descent into worse ME/CFS states. Has taken a year of figuring things out and slowly working my way with each one. Still a work in progress, in a much better place than a year ago, a month ago.
You have published Dominique’s work on T3 and thyroid for ME/CFS and FMS. This came from doctors. He seems to have teamed up with Bergquist on a recent paper. Bergquist said at the OMF open house May 1st that they are actively researching the treatments used for critical ill patients, and how they may be used for Me/CFS, following the hypothesis on their paper.
How about Ray Peat’s approach to hormones, progesterone, shifting metabolism, etc.
I get that maybe they can’t make recommendations without studies on Bs, T3, etc. Come to think of it, there are no studies on the use of medicines they are recommending for ME/CFS. So that point seems moot when you really think about it.
Allopathic and naturopathic doctors often use supplements the same way they use medicines: to ‘treat’ a symptom and not the disease (as Stefan mentioned.) Diabetes hasn’t been cured yet… (whicj, makes me think that even if governments funded research, Me/CFs will be in the same boat. Maybe better to fund the OMF and Ron Davis directly, as he has the urgency to solve this)
Our cells and systems are organizing themselves differently, and hence the way a doctor thinks a medicine works, will work differently on us. For example if normally substance X is regarded to bind to a metabolite, when you look further into it, it does so by moving calcium into the cell. A healthy body will have it’s calcium outside the cell and then that is all good and it works as it ‘should’. In a disease state like Me/CFs, it wil be inside and hence what the substance X does could be very different, produce the opposite effect, etc.
That’s why we hear the word paradox a lot – the body ‘should’ work this way in this situation, but in the ME/CFS body it’s not doing that. If they changed their model, they would see there is no paradox – it would all ‘make sense’. It really requires to shift the way of thinking about how cells organize themselves. What happens when ATP is extracellular, etc. Lucky for us some scientists have been asking these questions since.. the 1940s or so. There are precedents.
We tend to suffer from iatrogenia, because of this. Treatments often creating more problems than what they solve. My experience, others’ experiences ,etc.
I’m saddened when I read of someone with a digestive system that shuts down and hooked up to tubes… to think that B1 could have prevented that…. breaks my heart.
Vitamins and minerals are used in metabolic and mitochondrial diseases.
It is not a foreign concept to see them work for ME/CFS, since there is mitochondrial and metabolic dysfunction.
(Personally, I find amino acids tricky to supplement, and work at getting enough protein from food, etc)
One other recommendation. Instead of saying electrolytes I would specifically mention oral rehydration solutions that follow World Health Organization guidelines – https://www.healthrising.org/blog/2020/09/15/saline-ors-oral-rehydration-pots-chronic-fatigue-syndrome/#:~:text=Oral%20rehydration%20solution%20may%20provide%20a%20cheap%2C%20effective,orthostatic%20intolerance%20in%20chronic%20fatigue%20syndrome%20and%20POTS.
The Drs. suggesting the treatment tree stated in the blog are riding a slippery slope. First, there are drugs that MD’s will NOT prescribe such as Clonazapam, and many others on the list. I’ve had ME/CFS, S.E.I.D. (Disease) for 74 years, and there is NO treatment for this disease. I previously complained about Dr. Peterson, as he’s old school, and been in business with Anette and Harvey Wittemore, who tried to sell a test kit for ME/CFS years ago, that was bogus with no response from you. Dr. Nancy Klimas is also old school, and as a patient I would like to see fresh eyes look into this disease, not people with an agenda or who wish to publish their findings, ignoring the fact that there truly isn’t a cure for ME/CFS at present. I have been viewing your information, and am appalled at the lack of consideration you have for patients, giving them a sense of false hope that their symptoms can be relieved. Immune Globulin costs thousands of dollars, and no PCP in his/her right mind would order, nor would an insurance company pay suggested drugs. I’m opting out of what I feel are a group of snake oil salesmen, and hope that researchers will find a cure, or a treatment tree that’s available to all and works for many. One size doesn’t fit all.
I’m also concerned that you’ve changed your name from Phoenix Rising to Health Rising – is this true? We patients all want help, but in my opinion there is none at present, and we can all hope that people with COVID and variants who contract Long Haul, will stimulate monies from the government to study the disease. It’s been a long time coming, 1934 at LA General – see PLAGUE: by Dr. Judy Mikovits, a research scientist that peers have systematically ruined her career. Read the book! I will be dis-engaging from your pitifully sad site.
To hopefully answer some of your concerns, Lynn Health Rising has never stated there’s a cure for ME/CFS and I feel the same chagrin that you do at the many treatments that I’ve tried which have failed utterly. Still some people certainly do get some relief and some people – too few for sure – do get well. I think we’re all hoping that long COVID will bring the real answers this disease needs.
With regard to Dr. Mikovits – formerly an XMRV proponent, now an anti-vaxxer -and still an arch conspiracy monger – let’s just say you and I have very different opinions about her veracity.
I didn’t change the Phoenix Rising name to Health Rising. Phoenix Rising, the website I started so long ago, still exists. Nine years ago the small Board and I had a falling out leaving me no real choice but to leave. Health Rising is not affiliated with Phoenix Rising, which, by now is run by a completely different board.
Thanks Cort you do a great job always useful info here…what helps one may not help another it is trial an error.
Couple questions, hoping for answers/tips.
1. Does anyone know which Medicare Part D (in Massachusetts) covers IVIG? Was told that some Medicare part D plans will cover but not the one I picked last open enrollment.
2. Does anyone have experience with having a hearing with an Administrative Law Judge for approval of same? That is my next step after exhausting all appeals and it’s daunting to me.
This blog is incredibly helpful! I’m printing it out to take and discuss with my doctor.
Inosine Pranobex (Isoprinosin) increases production of WBC especially lymphocytes. I’ve tried inosine as a substitute but it had zero effect on WBC. Whoever wrote in the recommendations that inosine can substitute for isoprinosine, simply doesn’t know what they are talking about and is certainly not a specialist on the subject.
What are your recommendations for counseling/psychotherapies?