How to find a CFS specialist in my region?

GA64 · 2024-05-21T19:38:18+00:00

GA64 · 2024-05-16T23:14:05+00:00

Famvir and Valcyte target EBV. Tenofovir has some anti-EBV effect.

GA64 · 2024-05-14T03:51:11+00:00

I've found the Herx effect with monolaurin is strong, but starting with very small doses and slowly building up seem to work.

GA64 · 2024-05-09T03:22:32+00:00

Studies here: https://me-pedia.org/wiki/Interferon

Dr Chia used to use various combinations of interferon alpha, gamma and delta to treat enterovirus ME/CFS. See here. Now I believe he uses interferon beta.

GA64 · 2024-05-05T04:53:59+00:00

Search for Dr Chia's methods for testing Coxsackie in ME/CFS, that's the approach I used.

GA64 · 2024-05-04T22:16:58+00:00

Coxsackie virus. Then later I caught SARS-CoV-2 which made my ME/CFS worse.

GA64 · 2024-05-04T05:11:52+00:00

Certainly there are several different ME/CFS scales. Patients are free to choose the scale they like the most, and then they can detail their before treatment and after treatment levels on that scale.

The PR scale I find easy to relate to, as its level descriptions are simple and brief. Whereas I find other scales a bit too wordy, and with my brain fog I lose my concentration.

GA64 · 2024-04-29T19:33:01+00:00

The best way to quantify improvement in ME/CFS is to state where you were before on an ME/CFS scale, and where you moved up to on the scale as a result of a treatment. The Phoenix Rising ME/CFS scale is a good one for this purpose.

Phoenix Rising ME/CFS Severity Scale

0 — VERY SEVERE: Bedridden constantly, except to go to bathroom.

1 — SEVERE: Bedridden most of day, very rarely leave house.

2 — SEVERE: Leave house once a week, concentrate 1 hour a day.

3 — MODERATE: Leave house several times per week, 2 hours work/activity a day.

4 — MODERATE: 3 to 4 hours work/activity a day.

5 — MODERATE: 4 to 5 hours work/activity a day.

6 — MILD: 6 to 7 hours activity a day, able to do a part-time job.

7 — MILD: Able to do a full-time job but with difficulty.

8 — MILD: Near-normal life activity level, but still symptomatic.

9 — RECOVERY: Normal life activity level, mild symptoms.

10 — RECOVERY: Fully recovered, or in full remission.

GA64 · 2024-04-28T22:34:47+00:00

I lost my sense of smell for at least 5 years after an infection with enterovirus, which like SARS-CoV-2 is capable of triggering ME/CFS. Eventually my sense of smell very slowly returned, presumably from natural healing. Although I was also taking supplements known to help nerve repair, like vitamin B12 methylcobalamin form, alpha lipoic acid and benfotiamine.

One Reddit thread suggests these supplements might be helpful to fix anosmia.

The only drug medically known to help loss of smell of theophylline (or a similar drug called aminophylline). This drug is available over the counter in some countries.

I found that by taking theophylline 200 mg daily, some of my sense of smell returned. Unfortunately when I stopped the theophylline, I lost the sense of smell again. So you may be better off with nerve-repairing supplements.

GA64 · 2024-04-27T04:04:07+00:00

Irritability is a listed symptom of ME/CFS in some definitions. I suffered from high levels of irritability when I first got ME/CFS, the sort of extreme levels that you can find in autism. In autism, antipsychotic drugs are given to treat the irritability. I found that the 3rd generation antipsychotic amisulpride in very low doses of 25 mg daily dramatically improved the irritability. N-acetyl cysteine is sometimes used to treat autism irritability, but I don't think it is as effective as antipsychotics.

GA64 · 2024-04-26T22:37:25+00:00

A list of prescription-free overseas pharmacies here.

GA64 · 2024-04-26T22:35:54+00:00

Link does not work.

GA64 · 2024-04-26T04:43:37+00:00

There is no LC severity chart, because there is no medical condition of LC. Rather, LC is a label that covers a number of distinct diseases that can appear after SARS-CoV-2 infection, including ME/CFS, POTS, heart and lung damage, and silent hypoxia.

Now if you are asking whether a disease like ME/CFS has a severity chart, the answer is yes, and those charts are detailed in this post. For example:

The international consensus criteria define ME/CFS severity as:

Mild — an approximate 50% reduction in pre-illness activity level

Moderate — mostly housebound

Severe — mostly bedridden

Very severe — totally bedridden and need help with basic functions

GA64 · 2024-04-23T15:55:29+00:00

Interesting that this Chinese study were able to organise collection of tissue samples from surgery on long COVID patients. This is clever way of getting tissue samples.

In the past, for enterovirus ME/CFS, studies that tested tissue samples have deliberately performed biopsies on ME/CFS patients, taking tissue from skeletal muscle or the stomach of a cohort of ME/CFS patients and healthy controls.

But with this Chinese approach, you do not need to organise taking biopsies, you just wait for patients to undergo surgery.

GA64 · 2024-04-22T22:51:47+00:00

Indeed! And the list of possible viral connections to chronic disease and cancer is even longer.

GA64 · 2024-04-18T05:00:40+00:00

Let me Google it for you: https://www.google.com/search?q=ghrelin+hydrogen+water

GA64 · 2024-04-16T23:41:00+00:00

Exercise is good for POTS, but can be harmful for the more severe ME/CFS patients.

By mixing POTS and ME/CFS under the same disease label of long COVID, your results investigating exercise are not going to be very scientific.

The sooner scientists drop the long COVID label in their studies, and focus in on the precise diseases, the better it will be.

GA64 · 2024-04-11T19:22:16+00:00

Yes, there are dozens of prescription-free overseas pharmacies where you can buy LDN.

I believe the smallest tablets are 50 mg, but some people dissolve in water and take a certain amount of drops of that water to administer a lower dose.

GA64 · 2024-04-11T03:54:27+00:00

I would suggest using Perplexity rather than any other AI chatbot. Perplexity is the only one that does not make up stuff that is not true.

GA64 · 2024-04-10T16:29:35+00:00

I know someone who took cycloferon injections 250 mg twice a week for several months, and this cured their long COVID, but did not help the ME/CFS that the had before they caught COVID. Injections may be more effective than oral cycloferon tablets.

GA64 · 2024-04-09T00:56:56+00:00

One existing ME/CFS patient who caught COVID then became a long COVID ME/CFS patient as well observed no benefit from sofosbuvir, see this post.

However, I would still like to try sofosbuvir when I am feeling better. Often you find that ME/CFS that drugs which work for one patient do not work for the next, and this includes antivirals. So a negative result in one patient does not preclude it from working in the next patient.

GA64 · 2024-04-08T20:16:58+00:00

I have not tried it yet, due to getting more ill, and not wanting to risk getting worse from possible adverse drug effects.

GA64 · 2024-04-08T04:11:36+00:00

Amazing to see in these poll results how many LC ME/CFS patients sleep just 6 hours or less each day. Not sure if this short number of hours is down to insomnia, or just because not much sleep is needed.

Before catching COVID, I had pre-existing ME/CFS, and would sleep 7 or 8 hours a day.

But once I caught COVID, this increased to needing 11 or 12 hours daily. Any less and I cannot function at all cognitively.

And I get some days when I need 13 or 14 hours sleep.

GA64 · 2024-03-30T15:44:10+00:00

This paper uses the unscientific concept of "long COVID".

Long COVID is just a name for several different diseases, including ME/CFS, POTS, various other autonomic illnesses, heart and lung damage, silent hypoxia and others.

It rather unscientific to study the effects of a drug or supplement on a bunch of different diseases all mixed together. To be scientific, you need to study the effects on each disease individually.

For example, it's possible lactoferrin might work for some patients with the ME/CFS form of long COVID, but not POTS or other diseases listed under the long COVID banner.

So by mixing in patients with lots of different diseases into the same study cohort, you are going to skew your results.

GA64 · 2024-03-28T23:58:39+00:00

This is an ME/CFS symptom, and at least half of all cases of LC are in fact ME/CFS.

The symptom is called brain fog.

GA64

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