Management of severe and very severe ME/CFS fact sheet

It (the factsheet) estimates that around 1/1000 people have severe ME/CFS and that these patients need aids such as wheelchairs, lifts, adjustable daybeds, and, in some cases, tube feeding.

They also require help with assessments for work or education capacity and financial support.

The factsheet highlights the importance of reducing stimuli in hospital environments.

Examples include having a single room, blinds to reduce light, no intrusive noise, and
no use of perfumes or scented cleaning products.

It explains that these measures are not optional: "the need for reduction in stimulation from exertion and environment for people with ME/CFS is a unique situation, being a medical necessity rather than a matter of kindness."

The factsheet is critical of "Multidisciplinary teams of professionals assigned to different aspects of care", saying these "are likely to be counterproductive."

There should be a clear contact point (one person), such as a specialist nurse with deep understanding of ME/CFS.

It also states that "Rehabilitation-based approaches have produced no significant benefits or impact on prevalence and have no place in management."

But it's also critical of off-label treatments such as antihistamines, naltrexone, fludrocortisone, and ivabradine.

The factsheet argues that "We do not know what ought to be the best way to manage ME/CFS."

So speculative theories, whether on brain blood flow, mast cell sensitivity, energy metabolism, HPA axis dysregulation, deconditioning or psychosomatic influences should be avoided.

It also has an important section on why enteral or parental feeding can sometimes be necessary in ME/CFS. These should not be delayed on the grounds that the problem is ‘functional’ or that the reasons for failure are not well-defined.

s4me.info
u/WandaTheWandie — 23 hours ago

FDA chief janet woodcock back in may 2021: “Let the problem fester and it will come back to bite you when you’re not prepared.”

She argued that they should study vax injury: "I doubt the industry would support, for obvious reasons." 🙄

u/WandaTheWandie — 2 days ago

What if we’ve been measuring DNA contamination the wrong way?

A novel PCR method called LIDAR suggests conventional testing may miss much of the residual DNA in Covid-19 vaccines—helping explain why regulators and independent labs keep getting different results.

blog.maryannedemasi.com
u/WandaTheWandie — 4 days ago

How to Urge Your Federal Legislators to End Liability Protection for Vaccine Makers

Please use the form below to contact your federal Senators and Representatives and urge them to cosponsor this historic legislation.

Consider taking an additional step by calling the House Energy and Commerce Committee members to ask that they give H.R. 4668 a hearing. Start with those in your state first and call others if you have the time. It’s ok to call after hours and leave a message.

(The form is on the chd website, click the link.)

childrenshealthdefense.org
u/WandaTheWandie — 7 days ago

Republican Liberty Caucus Backs Rand Paul’s S. 3853 And Paul Gosar’s H.R. 4668 To End Vaccine Manufacturer Liability Shields

FOR IMMEDIATE RELEASE

February 26, 2026

REPUBLICAN LIBERTY CAUCUS BACKS RAND PAUL’S S. 3853 AND PAUL GOSAR’S H.R. 4668 TO END VACCINE MANUFACTURER LIABILITY SHIELDS

The Republican Liberty Caucus strongly supports Senator Rand Paul’s bill S.3853 and Congressman Paul Gosar’s companion bill H.R. 4668 to repeal the special liability protections granted to vaccine and biologic manufacturers.

These bills restore plaintiffs’ right—denied since 1986—to choose civil lawsuits against manufacturers or compensation through the National Vaccine Injury Compensation Program (VICP). H.R. 4668 also removes COVID-19 vaccines from “covered countermeasures” status under the 2005 PREP Act, allowing civil action for related injuries.

Background: In 1986 U.S. Congress passed the National Childhood Vaccine Injury Act (NCVIA), establishing a legal shield for vaccine manufacturers from lawsuits related to vaccine-related injuries. At the same time, the National Vaccine Injury Compensation Program (NVICP) was created as an alternative to traditional litigation, providing a “no- fault” system for compensating individuals injured by vaccines. This removed all product liability for vaccine makers.

In 2005 the Prep Act was passed that removes product liability for “EUA” vaccines/biologics when HHS secretary makes PREP Act Declaration. This was implemented for the Covid vaccines/biologics. The PREP Act directs such “countermeasures” to be covered by the Countermeasures Injury Compensation Program (CICP). This also needs to be repealed.

The reason HR5546 was passed in 1986 was because vaccine manufacturers were getting sued for vaccine injury and losing the cases. They went to Congress for liability protection and “threatened” to stop making vaccines.

Instead of improving safety and efficacy of their products, vaccine makers pushed for liability protection and Congress complied. If liability protection is removed, the litigation floodgates will open, and you will see advertisements on T.V. that you do not see now, like this: Have you or a loved one been injured by a vaccine?

Vaccine manufacturers must be held financially accountable like all other companies. Free-market forces and litigation risk drive higher safety standards, whereas shielding them from responsibility has done the opposite.

In Summary: These bills eliminate anti-free-market liability shields and correct failed central planning. Passing them will let injured Americans seek redress, incentivize manufacturers to rigorously weigh risks and benefits, and prioritize safety—the same market discipline that protects consumers of every other product.

Action Items

  • Contact your Senators and Representatives: urge them to cosponsor and vote for S. 3853 and H.R. 4668.
  • Call House Energy and Commerce Committee members: request a hearing on H.R. 4668.
  • Promote awareness of the unfulfilled testing requirements of the Childhood Vaccine Injury Act of 1986. Initiate a nationwide conversation about pharmaceutical manufacturers’ protection from accountability coupled with their unwillingness to comply with common sense testing.
  • Advocate for the repeal of immunity granted by the PREP Act of 2005.
  • Remember, the right to seek redress will protect the public going forward, which combined with retrospective accountability will incentivize the industry to weigh more heavily the risks and benefits of their products.
  • Educate friends, family, and colleagues on restoring accountability for pharmaceutical companies.

About the Republican Liberty Caucus: The Republican Liberty Caucus is a 527 voluntary grassroots membership organization dedicated to working within the Republican Party to advance the principles of individual rights, limited government and free markets. Founded in 1991, it is the oldest continuously-operating organization within the Liberty Republican movement.

rlc.org
u/WandaTheWandie — 9 days ago

Spanish study- mecfs patients get less sunlight exposure (probably because they get out less)

They suggest light exposure as a therapy for mecfs but um... it's probably mecfs that causes them to get less light exposure, not the other way around.

link.springer.com
u/WandaTheWandie — 11 days ago

Severe Covid leads to persistent viral reactivation, with >10 different viruses noted in the first 40 days after hospital admission.

Long Covid was specifically associated with reactivation of latent Anelloviridae virus
Work based on 1,154 patients in 20 centers and >200,000 samples

nature.com
u/WandaTheWandie — 12 days ago

COVID vaccine components lasting years? Our science review vs the headlines

A new 2026 systematic review in which I participated examined reports of COVID vaccine-related components detected months, and in some cases years, after vaccination. At the same time, another powerful discussion explores how doctors who questioned COVID policy were pressured into silence.

In This Video
We look at a newly published review analyzing the persistence of:
• Spike protein fragments
• Modified mRNA sequences
• Lipid nanoparticle components
• Where they were detected in the body
• How reliable those detections were
• Whether detection means biological harm (important distinction)

Key Findings Discussed:
✅ Some studies reported trace detections far longer than initially expected
✅ Many signals were near the detection limits of assays
✅ Some findings could not clearly separate vaccine-origin material from infection-origin material
✅ Fragmented material may persist longer than intact biologically active forms
✅ Detection does not automatically equal damage

Second Topic: What Happened to Doctors Who Spoke Out?

We also cover Dr. Joseph Varon’s comments on how many physicians faced:
• Professional pressure
• Media smears
• Speaking bans
• Isolation
• Fear of disciplinary action

And what that did to scientific debate during COVID.

youtube.com
u/WandaTheWandie — 13 days ago

‘Do you hear the people sing?’ Fauci world is not safe from the moral outrage of vaccine-injured

Fauci's invocation of the 5th Amendment 111 times ignited the anger in those abandoned by their Covid experiences. "We the people are very disgusted. Speaking as a vaccine injured person, and someone who lost my grandfather, aunt and cousin to the Covid protocols, I am so angry," Angelia Desselle wrote to me immediate after Fauci's hearing. "My family deserves answers, and I deserve answers," she asserted. She is not alone.

worldtribune.com
u/WandaTheWandie — 15 days ago

'Pace Me' app RCT on long COVID- no real benefit on post-exertional malaise

Abstract

In a 6-month pragmatic randomised controlled trial (RCT; ISRCTN16033549), we compared a just-in-time intervention to support energy management in adults with long COVID (LC) to standard care.

Participants received either the ‘Pace Me’ app and a wearable activity tracker (intervention) or an app only with data entry screens (control). The intervention group received just-in-time messages on energy management when they reached 50%, 75%, and 100% of their daily ‘activity allowance’. The primary outcome was post-exertional malaise (PEM) measured by the DePaul Symptom Questionnaire-PEM (DSQ-PEM).

Of 369 participants assessed for eligibility, 250 participants were randomised 1:1, and 77 controls and 84 intervention participants were included in the final per-protocol analysis. There was no time by group interaction for the DSQ-PEM. The intervention group value was 48 (95% CI 44-53) at baseline and 46 (95% CI 41-51) post-intervention (arbitrary units).

The control group value was 47 (95% CI 42-52) at baseline and 44 (95% CI 39-49) at follow-up (interaction effect p = 0.614, η²p = 0.002; trivial). No individual question exhibited an interaction effect (p > 0.05).

Although the intervention had minimal effect compared to control, the substantial recovery rates previously reported in LC, coupled with our wide inclusion criteria may have masked intervention effects. Therefore, future studies should consider this energy management framework in conditions without such recovery rates, such as CFS.

nature.com
u/WandaTheWandie — 16 days ago

Cell and tissue enrichment in ME/CFS

By matching DNA results with gene expression databases researchers can determine the tissues and cell types involved in various diseases. For ME/CFS, the results strongly point to neurons. One of the top hits is the medium spiny neuron, located in a region deep inside the brain called the striatum.

mecfsscience.org
u/WandaTheWandie — 17 days ago

Fauci invokes 5th Amendment right during GOP-led hearing on COVID origins

Fauci helped to lead the White House response for Presidents Trump and Biden and is now retired from government service. But he appeared today under congressional subpoena. He then took the Fifth more than 100 times to protect himself from self-incrimination.

pbs.org
u/WandaTheWandie — 19 days ago

PsyLoCo study - no significant effect of psychotherapy on symptoms, anxiety or depression in 48 lc patients

The intervention consisted 10 bi-weekly manual-guided group sessions (50 min each) covering
psychoeducation, somatic symptom processing, emotional regulation, and social reintegration.

Patients in the control group received treatment as usual.

there was no significant effect of the intervention on the outcomes used, namely: somatic symptom burden (SSS-8, primary outcome), and depressive (PHQ-9) and anxiety symptoms (GAD-7).

The paper conlcudes: "No statistically significant efficacy of the immediate group intervention over the waiting control condition was observed, across primary and secondary outcomes."

x.com
u/WandaTheWandie — 22 days ago

The Edogawa Protocol: A Breakthrough for Long COVID and Vaccine Injury?

Millions of people continue to live with debilitating symptoms months—or even years—after COVID-19 infection or vaccination. Many report chronic fatigue, neurological problems, cardiovascular symptoms, cognitive impairment, and other life-altering conditions, yet effective treatments remain elusive, and many patients say they have struggled to find physicians willing or able to help.

This week on VSRF Live, we welcome neuroscientist Dr. Kevin McCairn and Dr. Mary Talley Bowden for an in-depth discussion of the Edogawa Protocol, an emerging treatment approach developed in Japan that has attracted growing international attention. The protocol incorporates Double Filtration Plasmapheresis (DFPP) along with other therapeutic strategies aimed at addressing what its developers believe are key biological drivers of persistent illness, rather than simply managing symptoms.

Together, Drs. McCairn and Bowden will discuss why some patients continue to experience long-term symptoms following COVID-19 infection or vaccination, what current medicine may be overlooking, and whether new treatment strategies could offer hope where conventional approaches have fallen short. They'll also examine the science behind the protocol, including neuroinflammation, immune dysregulation, vascular dysfunction, mitochondrial health, and other mechanisms that have been proposed as contributors to chronic illness.

The conversation will also explore the practical questions many patients are asking: What is Double Filtration Plasmapheresis? How is it being used in Japan? What clinical outcomes have physicians observed so far? What research is still needed? And what would it take for this treatment to become available in the United States?

Could medicine be overlooking key drivers of Long COVID and post-vaccination illness? Is a fundamentally different treatment approach needed? Join us for a timely and thought-provoking discussion exploring one of the most talked-about emerging treatment strategies for patients living with persistent chronic illness.

rumble.com
u/WandaTheWandie — 24 days ago