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Hello, great article Mardi, thanks for sharing this! I'm a 45 y/o ME/CFS sufferer of 15-30 years, depending on how we count. Mito function tests show I have leaky mito membranes. Exact cause unknown - but chronic stress, viral load (EBV, HSV, shingles, Covid etc etc) and 40+ years of mouth breathing are all suspects. I'm not medically trained but reading around online it seems that omega 3 and good quality fats are really important for healing mito's, so I eat grass fed meat and lots of oily fish, plus supplement with a good quality omega 3 supplement, along with Astaxanthin and a heap of additional supplements, lots of greens and a low-sugar (but not low carb) whole food almost organic diet. I'd welcome any tips re reading around healing mito membranes and any supplements that are found to help heal mito membranes, just in case I've missed a trick.

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Greetings Andrew,

I am so appreciative of readers like you who are well informed and who are willing to share their perspectives and experience with this community. I have come to believe that it will only be by virtue of education that the vast majority of Long COVID sufferers will find resolution.

And yes, I do believe that LC and ME/CFS can be resolved. In my consulting, I've begun to draw parallels between the education of the ME/CFS-LC communities and the diabetes communities. Specifically, it requires education, personal awareness and self-care to establish a lifestyle and dietary patterns that support resolution and long-term wellness.

Specific to your situation, I'd like to be able to ask you for more details that may go beyond what you would want to share in a public space. Questions that I have relate to any information that you have about the suspect viruses, detection and interventional approaches. Also, the diagnosis of 'leaky' mitochondria. Can you offer more detail on how this was detected and what else may have been going on physiologically at the time? Knowing what supplements you have chosen to help with fatty acid normalization may also be useful.

Re viral interactions with mitochondria, the SARS-CoV2 virus has been shown to home to the inner wall of the mitochondrial cisternea. They essentially set up shop there and convert ATP production to support viral replication both draining needed ATP and creating ROS (reactive oxygen species) that damage the mitochondria.

Looking forward to hearing back from you.

Kind regards,

Mardi

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Wow, thanks Mardi!

I'll be pleased to share all in the spirit of helping boost understanding for all - although how representative my case is I don't know :)

Toxicity - DMSA blood tests seven years ago showed I had elevated lead, barium and thallium, but I've since done quite a bit of work with detoxing - filtered water, mostly organic diet, zeolite, lots of leafy greens, regular and then sporadic use of infra red sauna. We retested two years ago and these levels were nearer normal levels, but still a little high. Hopefully they're gradually coming down still!

Intel about the viruses - very little tbh, other than my potted history. We've not tested for their specific status so I don't know which of these are dormant, latent or active. I don't have symptoms of active viruses - e.g. my glands aren't up, no recurring sore throat or noticeable viral symptoms.

But plenty of general weirdness: https://andrewgiffordphotography.substack.com/p/my-mecfs-mysteries

Re leaky mito membranes - I paid privately for tests done by MMD lab in Germany (https://mmd-labor.de/de/LEISTUNGSANGEBOT/DIAGNOSTIK/index.php/), a summary of which was:

"Your immune cells are using 11 % of their possible oxygen consumption capacity for their base energy balance. This value is optimal. This indicates a load on the immune cells that is disrupting cell regulation. The maximum useable oxygen volume (in pmol oxygen/min) that can be converted into energy (ATP) by the mitochondria is 117 pmol/min. This potential oxygen consumption rate is, from an absolute perspective, considered to be considerably low. On energy demand, after subtraction of the basal

cellular oxygen consumption (13 pmol/min), 93 pmol oxygen/min remain for mitochondrial ATP generation. This means the absolute potential ATP turnover rate is considerably low. Against the backdrop of the other results, several factors may be responsible for the non-optimal absolute potential ATP turnover rate, either alone or in combination: a) insufficient mitochondrial mass:

b) the limited utilisation of fatty acids and particularly of glucose; c) insufficient provision of the immune cells with the requisite minerals, vitamins, etc.; d) a defective electron transport chain.

"Looking at all the results as a whole, several factors may be responsible for the reduced metabolic potential, either alone or in combination: a) limited utilisation of fatty acids and especially of glucose; b) insufficient mitochondrial cofactors; c) oxidative stress; d) dysfunctional complexes of the electron transport chain."

I confess, I can't put my hands on the report that said "leaky membranes" but one definitely did and I can dig deeper and try and retrieve this if helpful. I don't recall which membrane layer was wonky, either, sorry. Iirc the report said they were dropping molecules of oxygen and protons.

We've not tested further. "We" being the 'Optimum Health Clinic' in the UK. I'm obtaining Low Dose Naltrexone via 'The Burghwood Clinic' also in the UK (I'm four months in and now at 4mg I had the first glimpse of benefit this past weekend, where my cognition and energy went from a 2/10 self score to 3/10).

I would be very happy to share the report PDFs with you (via DM or email) and for these and/or your observations to be shared publicly - if you feel it's of possible public interest in your view.

My life history over past 10 years: chronically stressful job (15+ years), over-training to unwind and release stress with lots of long (ish) distance running and cycling, also unwinding through partying and festivals, 40+ years of mouth breathing, some trauma in earlier years - assault, bullied, grief of losing best friend, substantial injury from cycling accident (fractured ribs, pelvis, dislocated shoulder). It's been quite the ride!

Gradual onset ME/CFS. I feel I was never quite the same since EBV aged 15 (30 years ago) but a marked gradual decline that began aged c.30 and then life-limited from 35, and housebound for past three-five years. Not bed bound. I now struggle to work more than one hour each day.

Supplements:

CoQ10 400mg Daily

Magnesium malate 300mg Daily

ALA - alpha lipoic acid 650mg Daily

Acetyl L carnitine 500mg Daily

NAC - n acetyl cysteine 600mg Daily

B3 (niacin) 1500mg Daily

B complex -B1, B2, B6, Folate, B12 etc. Two capsules Daily

creatine monohydrate 2000mg Daily

Lysine 100mg Twice daily

Lecithin - sunflower 2400mg Daily

Collagen & Hyaluronic acid 600mg Daily

D3 4,00UI Alternate days

Glutathione (lapsed)

ATP Fuel - Researched Nutritionals Four capsules Daily

Transresveratrol 500mg Daily

Curcumin & bioperine 1000mg Daily

Kale, chlorella and spirulina powder

Beetroot and pomegranate powder

Loratadine

Shilajit

Multi mineral mix (electrolytes) Once daily 3-4g

Chaga mushrooms three-five times/week heaped teaspoon (now lapsed as it was lowering blood sugar)

Hope the information dump was useful! Of course, if you feel it's all a bit too much then please don't feel any implied pressure through my very apparent levels of hope placed upon this post. I of course fully understand and accept that you won't be provided a diagnosis or advice - instead some observations and reflections that I could mull and take my own full responsibility for.

Happy to correspond in DM's in parallel if you prefer :)

Andrew

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Hi Andrew,

There's an enormous amount to unpack. While your history raises more questions, it seems that many of the actions that you've taken are beneficial.

For subscribers at the Founding Member level, I offer zoom meetings. I wonder if this sort of situation would be meaningful for you ?

Please keep in mind that I approach answering questions as a consultant/teacher, not as a diagnosing or prescribing physician.

Kind regards,

Mardi

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Hi Mardi,

I did wonder if this might be information overload! Apologies if it felt overwhelming in any way, or an inadvertent abuse of your good will :)

I partly wanted to share this degree of information to offer a flavour of the degree of complexity us non-science-educated folks are facing (in my case with ME/CFS), usually with a lack of expert support except where it can be afforded privately. I've just been referred to the 'ME/CFS Clinic' at NHS in UK, but there's no-one medical on that team afaik - 'just' physio, nutrition and psychotherapy which five years ago told me I was already doing for myself all that they could suggest. Sigh.

I'm glad you feel I've taken some sensible steps meanwhile. I guess these may pay off yet, these things usually taking some time...

I'm in a precarious moment, facing the likely liquidation of my biz of 10 years and so I'm having to be very cautious about spending atm. I'm not able to justify upgrading to the Founding tier at the moment, in spite of it sounding very good value. I'm very grateful for the offer of a chat over Zoom once on that tier and I hope that others are able to take advantage of this re their own situations.

I'll continue to slum if on the free tier for the time being and circle back to you if/when needs (and funds) shift, keenly reading your earlier posts meanhwile.

In more encouraging news, I'm just entering the effective dose range of Low Dose Naltrexone and seeing some modest benefit after four months' loading dose. I'll see how this pans out and continue with my regime as above.

Thanks again, and for your most helpful writing - your Substack is a great resource!

Andrew

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Mardi, I just tried to share your link to this article with someone on Facebook and it was flagged as not being shareable for going against community standards. 😟

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Hi Stephanie,

A couple of days ago FB stopped one of my boosted posts that had received 794 likes and NO dislikes. I asked for an explanation so that I could modify it. No. They stopped that one and the next post that I tried to boost. Someone mentioned that they are not fans of Substack. Oh well, there are other ways to get the word out.

Hope that you are well.

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Learning to communicate so as not to upset some of the algorithms is a part of the challenge these days, I guess. I hope word of mouth will work here as well as it often does in the real world. Thanks for the update.

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Hi Stephanie,

I just read this comment from you written on March 5th. FB really has it in for my posts. I have had to learn subtle ways of posting and sharing. This generally involves NOT mentioning the word COVID at all in the title or first couple of sentences of the post.

They have also banned a photo of me, saying that it goes against community standards. I'm fully clothed, standing on a beach with my arms outstretched. No hand gestures, no nudity, nothing that should offend anyone. I don't have a clue where they are coming from.

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This is incredibly frustrating. I will come up with other creative ways to share your work on that platform.

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Did you ever try anything like Pomegranate

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Hi, I edited my response. I hope that it's useful. Thanks so much for commenting.

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Jan 10·edited Jan 10Author

We regularly consume pomegranate and papaya as part of a carefully designed diet. The strategy for us has been to avoid inflammatory foods and consume high value organic (when possible) foods that support nutritional needs and development and support of a healthy gut biome. Have a look at my earlier blogs for comments on how I used diet to support my recovery. Subscriptions are free unless you choose to pay.

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Nov 13, 2023Liked by Mardi Crane-Godreau, PhD

Thank you so much for this. Your post is very reflective of my own journey towards recovery. It has been a slow and steady progress towards greater resiliency and health. It feels supportive to my heart to read about your journey here as a story of success and helps me feel connected and not alone in this process. Thank you for sharing.

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Thanks Sara,

Each of the posts in the series addresses issues that have been challenges in my life since C-19 and hopefully, for which I have found ways of coping and even better, of returning back to a reasonable state of wellness. I'm still working on it, every day.

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I recently found that I have reactivated HHV6 herpes virus reactivation and came across a paper linking that to mitochondrial damage. My protocol looks almost identical to yours and I remain hopeful!

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Nov 7, 2023·edited Nov 7, 2023Author

I attended a conference on Long COVID at Dartmouth Medical School today (Nov 6th). The reemergence of Herpes family viruses was mentioned and is apparently relatively common in people with Long COVID.

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Hi David,

I had the same fate following minor surgery. My usual meds did little to quell it. Finally I added a GABA combo (True Calm) and got rapid relief. My shingles infection disappeared. There's a stress component to Herpetic infections and the GABA seems to have reduced the offending stress response. Anyway, it worked!

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Nov 7, 2023·edited Nov 7, 2023

Hello Mardi,

I have my True Calm and will add it to the list in due course. It's a good price!

I've been researching the use of hydrogen-rich water to lower systemic inflammation and came across this piece. https://wellnesshome24.com/hydrogen-water-mitochondria-and-energy/

My interest grew when I saw a comparative review of machines to produce the water at home. The top two were £500 (no thanks!) but third place was one for £65. I've been using it for two days now and I have noticed my heart rate is moderated at both rest and when active compared to before. I've also ordered a testing device as an independent check on the level of hydrogen.

This review covers some promising evidence. https://www.naturalmedicinejournal.com/journal/going-beyond-hype-hydrogen-water

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Interesting. Keep me in the loop on information. I know nothing about these devices or the water.

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I bought this machine and have been using it for a week. https://www.ebay.com/itm/134783826959

I also bought a hydrogen tester and the quoted hydrogen content was 1.1 ppm which is exactly the figure claimed. Further testing showed a 20% loss of the hydrogen when the water is left to stand (which I anticipated). I have got this hydrogen bottle on order as the smaller quantities and rapid preparation time look more suitable.

https://www.amazon.co.uk/dp/B092SHXP1M?tag=track-ect-uk-592662-21&linkCode=osi&th=1&ascsubtag=ecSEPhp0ajlomsr7es

It is also absurdly inexpensive. I will independently test that too. Yesterday I had 3.5 hours of intense meetings and I felt amazingly clear-headed with no obvious ill-effects today. That may of course be placebo but, as the safety of hydrogen-enriched water is well-established, I can see no downside. At the very least it keeps me well hydrated.

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20% loss when the water was allowed to stand for 10 minutes - more rapid loss at the start. So preparing and drinking immediately is the way forward.

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Very interesting! Did you have reactivated HHV-6?

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I don't know. My symptoms were consistent with earlier shingles inflections, but not as severe.

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I had a severe herpes infection on my shoulders in 2010 when I was 65 years old. Following 3 weeks of acyclovir / famciclovir and 6 weekly injections of methyl cobalamin injections, I continued for 3 more months on daily Gabapentin, as the lingering after effects like irritation, pain, skin colour etc slowly disappeared, eventually completely. Gabapentin is a very useful protocol. I believe it helps in mitochondrial recovery. My 87 year old brother, an initial, recent Parkinson’s patient ( non diabetic) recently suffered a spinal bone fracture in a bath room fall. He is now in total bed rest, recommended for about 3 months. No other procedure possible for him. He has been prescribed a supplement containing Me-cobalamine, folic acid and L-carnitine. The last one, an amino acid, is said to improve muscle strength and mitochondrial functions. I am advising him to seek his doctor’s opinion for a long course of Gabapentin. I think it is appropriate. He has also been prescribed Cissus quadrangularis root tablets. This seems to be a traditional plant based medicine ( roots) meant for bone healing. It contains a host of anabolic steroids, flavonoids, phytosterols and stilbene derivatives.

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Nov 5, 2023·edited Nov 7, 2023Author

GABA and Gabapentin are different and have different purposes. Gabapentin a prescription drug used to treat epilepsy and is also taken for nerve pain, caused by different conditions, including diabetes and shingles. In contrast, GABA is made by the body and is available in the US 'over the counter'. Gabapentin is being prescribed by some providers to treat pain in LC patients.

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