List of ME/CFS Recovery and Improvement Stories

[Wishful]

Which criteria are you looking at?

I forget which one in the past had mention of exceptions, which is sensible since we vary so much. Maybe they've dropped that to tighten up selection for cohorts?

Whether you have cognitive or physical PEM doesn't matter, pacing applies to either or both.

I can't remember whether pacing actually made a difference for me. My PEM was short, just feeling lousy for part of the next day, so I didn't make much effort to pace myself. If I really needed to be functional the next day, I'd avoid obvious triggering activities.

Pacing wouldn't have applied to my cognitive-induced PEM, since it might have taken less than a minute of chatting to trigger it. Pace by only saying part of a sentence? I can't remember whether doing income taxes or trying to solve a difficult computer problem was affected by pacing, since those were necessary tasks and I just accepted having a lousy next day.

 

[eucatatrophe]

I forget which one in the past had mention of exceptions, which is sensible since we vary so much. Maybe they've dropped that to tighten up selection for cohorts?


I can't remember whether pacing actually made a difference for me. My PEM was short, just feeling lousy for part of the next day, so I didn't make much effort to pace myself. If I really needed to be functional the next day, I'd avoid obvious triggering activities.

Pacing wouldn't have applied to my cognitive-induced PEM, since it might have taken less than a minute of chatting to trigger it. Pace by only saying part of a sentence? I can't remember whether doing income taxes or trying to solve a difficult computer problem was affected by pacing, since those were necessary tasks and I just accepted having a lousy next day.

Here's a great list of the different diagnostic criteria that have been used and are used now if you're interested.

Yeah, that's fair. Pacing can fall apart when you're severe. At that point I read it more as "stop, rest" rather than "stop, rest, pace" since the idea is to stay in your energy envelope, not just to take breaks. That's only part of it

 

[Wishful]

since the idea is to stay in your energy envelope

There's the problem: I never had an energy envelope. My physical triggers seemed to be due to muscle damage (using muscles unusually) rather than duration of exertion, so pacing wouldn't apply. For cognitive activities, it also seemed to be due to unusual activities, such as chatting or dealing with a really challenging/frustrating problem, so again, pacing wouldn't apply.

I don't mind if the ME criteria exclude me from studies that are trying to find common elements. I wouldn't want to screw up a study by throwing numbers off. Since having an official diagnosis of ME wouldn't make any difference for me (no official treatment options or disability benefits, etc), I also don't care about fitting the criteria.

I wouldn't want the criteria to be so restricted that it predisposes decisions about how PWME are dealt with. Imagine if in order to get disability benefits, you had to prove that you had 28 specific symptoms, many of which were hard to actually measure. Likewise, unethical researchers could "prove" their theory by restricting cohort selection to whatever fits their theory.

 

[Hip]

Can we keep on topic please.

 

[Wayne]

@Hip -- I just did a Forum Summarizer query on this thread, and thought I'd post it here. Please feel free to delete if you don't think it's appropriate. -- Wayne

Please summarize the stories and testimonials and accounts of recovery on the following thread: https://forums.phoenixrising.me/threads/list-of-me-cfs-recovery-and-improvement-stories.80502/ Are there any common themes or treatment strategies that worked? Please make this summary as long as needed to get a good understanding of the various healing strategies employed by these people who have recovered.

The Phoenix Rising thread titled "List of ME/CFS Recovery and Improvement Stories" compiles patient accounts of treatments that led to full recovery or significant improvement in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) symptoms. Below is a detailed summary of the stories and testimonials, followed by an analysis of common themes and treatment strategies. The summary draws from various posts within the thread, focusing on specific cases and the approaches they used, while noting the diversity and individualized nature of the outcomes.https://forums.phoenixrising.me/threads/list-of-me-cfs-recovery-and-improvement-stories.80502/

---

Summary of Recovery and Improvement Stories​

The thread, initiated in 2020, is a repository of ME/CFS recovery and improvement stories, curated primarily by a user named Hip and supplemented by contributions from other forum members. It includes accounts of full recoveries (reaching remission) and substantial improvements (moving up at least one level on the ME/CFS severity scale: very severe, severe, moderate, mild, remission). The stories cover a wide range of treatments, from pharmaceuticals and supplements to lifestyle changes and alternative therapies. Below are key examples organized by treatment or approach, with details on the outcomes and context.

1. Pharmaceutical Interventions​

• Prednisolone for Post-Exertional Malaise (PEM):
  • A patient named Hamsterman, who was bedbound with severe ME/CFS, reported that a one-off dose of 20 mg prednisolone taken 30 minutes before major exertion prevented PEM entirely. This allowed him to complete a full gym workout without repercussions, a significant improvement for someone typically unable to tolerate exercise. He cautioned against daily use due to immunosuppressive risks, suggesting occasional use for specific activities.https://forums.phoenixrising.me/threads/list-of-me-cfs-recovery-and-improvement-stories.80502/
• Mestinon (Pyridostigmine):
  • One patient described moving from being housebound and mostly bedbound to mild ME/CFS (only experiencing PEM from cardio exercise) within two months of starting Mestinon at 45 mg three times daily. They sustained improvements for 4–5 months, enabling part-time work from home and strength training in physical therapy. The speed of improvement varied, with some noticing benefits within weeks.https://forums.phoenixrising.me/thr...ecovery-and-improvement-stories.80502/page-10
  • Another account on HealthRising.org highlighted a recovery attributed to Mestinon, though specific details on dosage or timeline were not provided in the thread.https://forums.phoenixrising.me/threads/list-of-me-cfs-recovery-and-improvement-stories.80502/page-2
• Antivirals (e.g., Valcyte, Famvir):
  • A patient using Valcyte reported recovery in October 2018, with no further forum activity, suggesting they may have left the community post-recovery.https://forums.phoenixrising.me/thr...went-on-to-live-their-lives-35-stories.81050/
  • Another individual, treated with Famvir (an antiviral), Celebrex (an anti-inflammatory), an antidepressant, and Tramadol, improved from a 1–3/10 functionality to 8/10, indicating a substantial gain.https://forums.phoenixrising.me/threads/list-of-me-cfs-recovery-and-improvement-stories.80502/page-2
  • A patient with a history of possible infections (e.g., Epstein-Barr, Mycoplasma) achieved remission after four years of antiviral and antimicrobial treatments but relapsed later. They regained remission by December 2022 after focusing on gut restoration targeting Candida for over two years.https://forums.phoenixrising.me/thr...ecovery-and-improvement-stories.80502/page-11
• Low-Dose Abilify:
  • A patient with post-viral ME/CFS for seven years (from age 12–19) achieved full remission after five months using low-dose Abilify, an intense autoimmune protocol diet (Goldner protocol: 3L water, raw cruciferous vegetables, no other foods), and experiencing a cold for the first time in years. They moved from mild (50% function) to full remission, with no PEM. However, the thread notes that Abilify’s benefits often fade after a few months for many patients.https://forums.phoenixrising.me/thr...ecovery-and-improvement-stories.80502/page-10
• PrEP (Tenofovir + Emtricitabine):
  • A patient on PrEP for five years reported improved physical capacity and recovery rates, supported by objective data like parkrun times and Strava logs. They noted deterioration when stopping the medication due to supply issues, suggesting a sustained benefit.https://forums.phoenixrising.me/thr...ecovery-and-improvement-stories.80502/page-10
• Low-Dose Naltrexone (LDN):
  • LDN was described as “nearly miraculous” for pain relief in a patient with osteoarthritis, ME/CFS, and severe axonal polyneuropathy. At 1 mg daily for six years, it eliminated the need for other painkillers, though it didn’t impact other ME/CFS symptoms.https://forums.phoenixrising.me/threads/list-of-me-cfs-recovery-and-improvement-stories.80502/page-8

2. Supplements and Nutraceuticals​

• N-Acetyl Glucosamine (NAG):
  • Hip reported eliminating moderate-to-severe generalized anxiety disorder (a common ME/CFS symptom) using NAG and other supplements. Many others in the forum also experienced reduced anxiety, indicating a reproducible effect for this symptom.https://forums.phoenixrising.me/threads/list-of-me-cfs-recovery-and-improvement-stories.80502/
• Prebiotics (Inulin, FOS):
  • Hip found that prebiotics like inulin and fructooligosaccharides (FOS) significantly reduced anxiety and improved mood, likely by supporting gut health. However, a later post clarified that prebiotics can feed harmful bacteria, suggesting caution.https://forums.phoenixrising.me/threads/list-of-me-cfs-recovery-and-improvement-stories.80502/https://forums.phoenixrising.me/threads/list-of-me-cfs-recovery-and-improvement-stories.80502/page-9
• C60 (Buckminsterfullerene):
  • A patient with moderate ME/CFS achieved at least a one-level gain (returning to work) after taking C60, a mitochondrial-targeting antioxidant. However, the thread notes that other patients trying C60 reported no benefits, indicating variability.https://forums.phoenixrising.me/threads/list-of-me-cfs-recovery-and-improvement-stories.80502/https://forums.phoenixrising.me/threads/list-of-me-cfs-recovery-and-improvement-stories.80502/page-9
• High-Dose Thiamine (Vitamin B1):
  • One patient reported a “massive improvement” in symptoms and energy after seven days at 1200 mg of thiamine, reaching a therapeutic dose. Others noted transient benefits that faded after initial doses, suggesting individual differences in response.https://forums.phoenixrising.me/threads/list-of-me-cfs-recovery-and-improvement-stories.80502/page-6
• Chinese Skullcap:
  • Used as a PEM “buster,” Chinese skullcap prevented PEM in some patients but didn’t consistently improve baseline ME/CFS severity. Its inclusion in the thread was debated, as PEM busters typically don’t alter overall disease state.https://forums.phoenixrising.me/threads/list-of-me-cfs-recovery-and-improvement-stories.80502/page-6
• Cumin (Cuminum cyminum):
  • A patient credited cumin with blocking and curing physically induced PEM, a unique claim not widely replicated. They acknowledged that other treatments, like T2 (iodine), were idiosyncratic and not broadly successful.https://forums.phoenixrising.me/threads/list-of-me-cfs-recovery-and-improvement-stories.80502/https://forums.phoenixrising.me/threads/list-of-me-cfs-recovery-and-improvement-stories.80502/page-8
• Inosine + DMAE:
  • A patient referenced a blog suggesting inosine combined with DMAE could mimic Imunovir’s antiviral effects at a lower cost. While not a direct recovery story, it was proposed as a potential treatment based on patent analysis, though no widespread success was reported.https://forums.phoenixrising.me/threads/list-of-me-cfs-recovery-and-improvement-stories.80502/page-2
• Ubiquinol/CoQ10 and Ozone Therapy:
  • A woman attributed her recovery to Ubiquinol (a form of CoQ10) and ozone therapy, though specific details on duration or severity weren’t provided.https://forums.phoenixrising.me/threads/list-of-me-cfs-recovery-and-improvement-stories.80502/page-3

3. Diet and Lifestyle Changes​

• Strict Avoidance of Triggers:
  • A patient improved from severe to moderate ME/CFS by strictly avoiding dietary and environmental triggers (e.g., fragrances, certain foods). This required experimentation and lifestyle changes but didn’t involve medications.https://forums.phoenixrising.me/threads/list-of-me-cfs-recovery-and-improvement-stories.80502/page-9
• Goldner Autoimmune Protocol:
  • As mentioned, a patient used this highly restrictive diet (raw vegetables, fruits, no processed foods) alongside Abilify, achieving full remission. The diet alone raised functionality by ~25%, eliminating PEM.https://forums.phoenixrising.me/thr...ecovery-and-improvement-stories.80502/page-10
• No Dairy, Gluten, Caffeine, Alcohol, Processed Foods:
  • A patient saw improvement over one to two months after eliminating these foods and fragrances, though baseline function later eroded due to emotional and exertional demands.https://forums.phoenixrising.me/threads/list-of-me-cfs-recovery-and-improvement-stories.80502/page-9
• Yoga and Exercise (Non-Graded):
  • One recovery was attributed to yoga and exercise, distinct from graded exercise therapy (GET), emphasizing gentle movement. A 2015 newspaper article also cited yoga for a moderate-to-severe ME/CFS recovery. However, some patients found yoga exhausting, highlighting variability.https://forums.phoenixrising.me/threads/list-of-me-cfs-recovery-and-improvement-stories.80502/page-3

4. Infection-Targeted Treatments​

• Antimicrobials for Underlying Infections:
  • A patient diagnosed in 2013 with severe ME/CFS reached remission in 2017 after four years of treatments targeting Mycoplasma pneumoniae, Candida, Epstein-Barr, and Lyme disease. A relapse occurred, but remission was regained by 2022 after nearly three years of Candida-focused gut treatments. Their case, published in a medical journal, noted complicating factors like undiagnosed hypothyroidism and chronic sinusitis.https://forums.phoenixrising.me/thr...ecovery-and-improvement-stories.80502/page-11
• Heavy Metal Detox and Chelation:
  • A recovery story involved heavy metal detoxification, though details on agents or testing were sparse, making it hard to replicate.https://forums.phoenixrising.me/threads/list-of-me-cfs-recovery-and-improvement-stories.80502/page-3
• Cavitation Surgery:
  • Two patients reported full recovery after surgery for jawbone cavitations (often linked to wisdom teeth extractions), which were thought to contribute to adrenal fatigue and CFS symptoms. The thread notes cavitations don’t always cause local pain, complicating diagnosis.https://forums.phoenixrising.me/threads/list-of-me-cfs-recovery-and-improvement-stories.80502/page-2

5. Alternative and Experimental Therapies​

• Activated Oxygen (Singlet Oxygen Therapy):
  • Dr. Claire Bowen, with a 20-year history of infection-triggered ME/CFS, recovered using an Airnergy machine for activated oxygen therapy. Her case was complicated by multiple relapses and recoveries since childhood, suggesting this therapy might align with natural fluctuations rather than being solely causative.https://forums.phoenixrising.me/threads/list-of-me-cfs-recovery-and-improvement-stories.80502/page-6
• Interferon Suppositories:
  • Proposed as a maintenance therapy post-interferon treatment, which dramatically improves ~50% of enterovirus-linked ME/CFS cases. However, relapse often occurs months later, and no direct recovery stories confirmed sustained success with suppositories.https://forums.phoenixrising.me/thr...ecovery-and-improvement-stories.80502/page-10
• Testosterone and Anastrozole:
  • A patient (John Bochenek) reported possible full recovery using testosterone, anastrozole, cinnamon/chromium, and L-lysine, though the thread lacked details on how these specifically addressed ME/CFS.https://forums.phoenixrising.me/threads/list-of-me-cfs-recovery-and-improvement-stories.80502/page-2

6. Other Notable Stories​

• Josh’s Protocol (Unspecified):
  • A patient (BrightCandle) improved from nearly housebound to tolerating low-level exercise, with relief from sore throat, neck pain, and other symptoms. The protocol’s details were restricted due to Phoenix Rising’s rules on experimental treatments, limiting replication. Improvements were ongoing but not yet remission.https://forums.phoenixrising.me/threads/list-of-me-cfs-recovery-and-improvement-stories.80502/page-7
• 35 Recovery Stories (Overview):
  • A separate thread referenced 35 Phoenix Rising members who recovered and left the forum, with treatments like Valcyte noted but not detailed. This suggests a pattern of successful patients disengaging, potentially skewing community data.https://forums.phoenixrising.me/thr...went-on-to-live-their-lives-35-stories.81050/
• T3 Monotherapy:
  • Though not directly detailed in recovery stories here, a related thread discussed T3 (liothyronine) for ME/CFS, with some patients improving dramatically at high doses (175–400 µg daily). Success was linked to addressing subclinical hypothyroidism, though results varied.https://forums.phoenixrising.me/threads/t3-monotherapy-for-me-cfs-or-fm.86485/

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Common Themes and Treatment Strategies​

The thread highlights a striking diversity in treatments, with no universal cure emerging. However, several themes and strategies recur across the stories, reflecting both the complexity of ME/CFS and the individualized nature of recovery. Below are the key patterns:

1. Targeting Underlying Infections:
   • Many recoveries involved addressing infections (viral, bacterial, fungal) implicated in ME/CFS, such as Epstein-Barr, Mycoplasma, Candida, or Lyme disease. Antivirals (Valcyte, Famvir), antimicrobials, and long-term gut-focused treatments (e.g., Candida eradication) were common. This aligns with theories that persistent infections drive ME/CFS in some patients.https://forums.phoenixrising.me/thr...ecovery-and-improvement-stories.80502/page-11https://forums.phoenixrising.me/threads/list-of-me-cfs-recovery-and-improvement-stories.80502/page-2https://forums.phoenixrising.me/thr...went-on-to-live-their-lives-35-stories.81050/
   • Example Insight: The patient who oscillated between mild and severe ME/CFS achieved lasting remission only after nearly three years of gut restoration, suggesting that sustained, multi-year treatment may be necessary for infection-related cases.
2. Immune Modulation and Inflammation Reduction:
   • Treatments like prednisolone, LDN, and Abilify suggest that modulating immune responses or reducing inflammation can alleviate symptoms, particularly PEM and pain. Prednisolone’s PEM prevention and LDN’s pain relief highlight immune dysregulation as a target.https://forums.phoenixrising.me/threads/list-of-me-cfs-recovery-and-improvement-stories.80502/https://forums.phoenixrising.me/threads/list-of-me-cfs-recovery-and-improvement-stories.80502/page-8
   • Caution: Immunosuppressive drugs like prednisolone carry risks (e.g., viral proliferation), and Abilify’s benefits often wane, indicating these are not long-term solutions for all.
3. Gut-Brain Axis and Microbiome Support:
   • Prebiotics, restrictive diets (e.g., Goldner protocol, no dairy/gluten), and Candida treatments underscore the gut’s role in ME/CFS. Improvements in anxiety, mood, and energy after gut-focused interventions suggest a gut-brain connection, possibly via microbiome modulation or reduced inflammation.https://forums.phoenixrising.me/threads/list-of-me-cfs-recovery-and-improvement-stories.80502/https://forums.phoenixrising.me/thr...ecovery-and-improvement-stories.80502/page-11https://forums.phoenixrising.me/thr...ecovery-and-improvement-stories.80502/page-10
   • Example Insight: Hip’s anxiety reduction with prebiotics and the remission achieved through Candida treatment highlight gut health as a leverage point, though results vary.
4. Mitochondrial and Energy Metabolism Support:
   • Supplements like C60, Ubiquinol/CoQ10, and high-dose thiamine target mitochondrial function or energy production, reflecting hypotheses that ME/CFS involves metabolic dysfunction. While some patients saw dramatic gains, others reported no effect, suggesting subset-specific benefits.https://forums.phoenixrising.me/threads/list-of-me-cfs-recovery-and-improvement-stories.80502/https://forums.phoenixrising.me/threads/list-of-me-cfs-recovery-and-improvement-stories.80502/page-6https://forums.phoenixrising.me/threads/list-of-me-cfs-recovery-and-improvement-stories.80502/page-3
   • Example Insight: C60’s success in one patient (returning to work) contrasts with its failure in others, indicating possible genetic or metabolic differences.
5. Personalized and Multi-Pronged Approaches:
   • Most stories involved combinations of treatments tailored to individual triggers (e.g., infections, diet, stress). Patients often experimented extensively, adjusting protocols over months or years. For example, the patient using antivirals, diet, and gut treatments took four years for initial remission and nearly three more for sustained recovery.https://forums.phoenixrising.me/thr...ecovery-and-improvement-stories.80502/page-11
   • Key Observation: No single treatment worked universally; what helped one patient often failed for others, emphasizing the need for personalized medicine.
6. PEM Management as a Gateway to Improvement:
   • Preventing or reducing PEM (via prednisolone, cumin, Chinese skullcap, or Mestinon) allowed some patients to increase activity without crashes, sometimes leading to broader gains. While PEM busters didn’t always improve baseline ME/CFS, they enabled lifestyle changes that supported recovery.https://forums.phoenixrising.me/threads/list-of-me-cfs-recovery-and-improvement-stories.80502/https://forums.phoenixrising.me/thr...ecovery-and-improvement-stories.80502/page-10
   • Example Insight: Mestinon’s rapid impact on PEM enabled part-time work, suggesting that breaking the PEM cycle can unlock functional gains.
7. Dietary and Environmental Trigger Avoidance:
   • Eliminating triggers like gluten, dairy, fragrances, or heavy metals was critical for some, often requiring rigorous experimentation. These interventions improved baseline function (e.g., severe to moderate) but were rarely sufficient alone for remission.https://forums.phoenixrising.me/threads/list-of-me-cfs-recovery-and-improvement-stories.80502/page-9https://forums.phoenixrising.me/threads/list-of-me-cfs-recovery-and-improvement-stories.80502/page-3
   • Challenge: Long-term adherence is difficult, and external factors (e.g., vaccines, pollen) could erode gains.
8. Alternative Therapies and Idiosyncratic Successes:
   • Therapies like activated oxygen, cavitation surgery, or ozone therapy led to recoveries in isolated cases, but their mechanisms are unclear, and replication was limited. These stories highlight the potential for unconventional approaches but also the risk of attributing recovery to natural fluctuations.https://forums.phoenixrising.me/threads/list-of-me-cfs-recovery-and-improvement-stories.80502/page-6https://forums.phoenixrising.me/threads/list-of-me-cfs-recovery-and-improvement-stories.80502/page-2https://forums.phoenixrising.me/threads/list-of-me-cfs-recovery-and-improvement-stories.80502/page-3
   • Example Insight: Claire Bowen’s oxygen therapy success may reflect her cyclical disease pattern rather than a universal fix.
9. Time and Persistence:
   • Many recoveries took years (e.g., 4–7 years for infection-targeted cases), requiring sustained effort and adaptation. Relapses were common, but some patients regained remission by refining their approach, underscoring resilience as a factor.https://forums.phoenixrising.me/thr...ecovery-and-improvement-stories.80502/page-11https://forums.phoenixrising.me/thr...ecovery-and-improvement-stories.80502/page-10
   • Key Observation: Short-term “flash-in-the-pan” improvements (e.g., Abilify, initial thiamine doses) often faded, but long-term strategies had better staying power.
10. Potential Subclinical Conditions:
    • Some recoveries uncovered treatable conditions like hypothyroidism (T3 therapy), jawbone cavitations, or heavy metal toxicity, suggesting ME/CFS symptoms may overlap with or be exacerbated by other disorders. Comprehensive testing (e.g., thyroid panels) was critical in these cases.https://forums.phoenixrising.me/thr...ecovery-and-improvement-stories.80502/page-11https://forums.phoenixrising.me/threads/list-of-me-cfs-recovery-and-improvement-stories.80502/page-2https://forums.phoenixrising.me/threads/t3-monotherapy-for-me-cfs-or-fm.86485/
    • Example Insight: The patient with hypothyroidism noted in their journal article likely benefited from addressing a coexisting condition, not just ME/CFS.

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Critical Analysis and Limitations​

• Heterogeneity of ME/CFS: The thread underscores that ME/CFS is likely a heterogeneous condition, with different triggers (infections, toxins, stress) and mechanisms (immune, metabolic, neurological). This explains why treatments are hit-or-miss across patients.
• Idiosyncratic Responses: As Hip notes, “often the recovery or improvement is idiosyncratic: it works for one patient, but when others try the same treatment, it does not help.” This frustrates efforts to identify a universal protocol.https://forums.phoenixrising.me/threads/list-of-me-cfs-recovery-and-improvement-stories.80502/page-3
• Relapse Risk: Several stories (e.g., Abilify, interferon) highlight temporary gains followed by relapse, suggesting that underlying drivers may persist despite symptom relief.https://forums.phoenixrising.me/thr...ecovery-and-improvement-stories.80502/page-10
• Data Gaps: Many accounts lack details on dosages, timelines, or objective measures, and some patients left the forum post-recovery, limiting follow-up. The 35 “silent recoveries” suggest underreporting of success.https://forums.phoenixrising.me/thr...went-on-to-live-their-lives-35-stories.81050/
• Placebo and Natural Recovery: Some improvements (e.g., yoga, oxygen therapy) may reflect placebo effects or spontaneous remission, especially in patients with fluctuating symptoms.https://forums.phoenixrising.me/threads/list-of-me-cfs-recovery-and-improvement-stories.80502/page-6
• Risk of Harm: The thread proposes a separate list for treatments causing long-term regression, acknowledging that some interventions (e.g., high-dose steroids, untested protocols) can worsen ME/CFS.https://forums.phoenixrising.me/threads/list-of-me-cfs-recovery-and-improvement-stories.80502/page-7

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Conclusion​

The Phoenix Rising thread offers a rich tapestry of ME/CFS recovery and improvement stories, showcasing both hope and complexity. Treatments range from pharmaceuticals (Mestinon, antivirals, LDN) to supplements (NAG, thiamine, C60), dietary changes (trigger avoidance, autoimmune protocols), and alternative therapies (oxygen, cavitation surgery). Common strategies include targeting infections, modulating immunity, supporting gut health, enhancing mitochondrial function, and managing PEM, often in combination over years. However, the idiosyncratic nature of responses—no treatment works for everyone—underscores the need for personalized, experimental approaches backed by comprehensive testing. While inspiring, the stories also caution against expecting quick fixes, as relapses and variability are common. For patients, the thread suggests persistence, adaptability, and a willingness to explore multiple avenues as the path to recovery or meaningful improvement.https://forums.phoenixrising.me/threads/list-of-me-cfs-recovery-and-improvement-stories.80502/https://forums.phoenixrising.me/threads/list-of-me-cfs-recovery-and-improvement-stories.80502/page-7https://forums.phoenixrising.me/thr...ecovery-and-improvement-stories.80502/page-11
2025-04-13 22:05:59

 

[Wishful]

You can add me under LDN. It completely blocked my ME pain, and after 2 years on it, the effect was permanent (at least that pain hasn't returned).

One problem with your list is that it gives the impression that these are the only recoveries known for each treatment, or that these are verified, since the list doesn't include claims for success from magnetic bedding, colored lights, or other alternative treatments that few people would believe.

Another problem: you are ascribing the recovery to a given treatment, but the patient was actually trying several treatments at the same time (also leaving out the possibility of an unknown factor being responsible), which gives a false impression that one specific one was responsible for the recovery.

I'm not convinced that this summary will help more people than it will harm by its biases.

 

[Rufous McKinney]

I just did a Forum Summarizer query on this thread, and thought I'd post it here. Please feel free to delete if you don't think it's appropriate. -- Wayne

very clever, and this is valuable and it might be feasible to read it, versus 14 pages on the thread.

I've discussed LDN in different threads: I guess the computer/query can't determine that.

A huge challenge in this Forum is threads vanish, sometimes for years. And threads proliferate a bit like Paramecium. I wonder how many Success story improvement story recovery story threads exist in this place?