The Observer/Guardian article: Does the microbiome hold the key to chronic fatigue? About patient led 'research' group Remission Biome.

I am one of the lucky ones with a pretty good lottery ticket.

I do not experience the severe ME type symptoms that I did for 25 plus years through multiple, ongoing antimicrobial treatment. I am one of the lucky ones that this approach worked.

Underlying infections and immune deficiencies mean I need to stay on antimicrobials to remain well.

This approach did not resolve my daily migraines which got worse over time. Monoclonal antibody is now, fingers crossed, working here.

I have shared my experience and supported many to explore whether same or similar might help them. Some it works for, others not a jot.

Until patients can be stratified based on science and research patients are flying blind. And it takes a lot if resources, effort, time and scientific reading and social support to attempt treatments. I share to support others who are exploring. But it's important that patients understand what they are undertaking and that they don't jump on a bandwagon by being mislead by overly optimistic, poor quality information.

Ultimately, I think that it is unlikely that the type of treatment approach that got me well will ever be researched or studied in clinical and research. Too complex. Too long to recover and too expensive. However, whatever combination of factors that made me severely affected by ME type symptoms - can be elucidated then newer, faster, more reliable treatments can hopefully be developed. Along with the subgroup stratification so that the patients can have treatments tested in RCTs. Patient experimenters have a lot of knowledge to share but it must be done responsibly and with care.

 

If you have an underlying immune deficiency with chronic or recurrent bacterial infections, and you also have ME, it's likely that treating that would make you feel less fatigued. But you are not treating ME, you are treating a separate process that just so happened to make your ME symptoms worse.

I think some patients have separate issues making their fatigue worse and make the assumption they are treating ME when they deal with those and feel better.

I have many food intolerances that make some of my ME symptoms a lot worse. I avoid those foods, but I wouldn't say that a strict diet is a treatment for ME, it clearly isn't.

 

I imagine it’s probably a factor in most debilitating illnesses, even those with treatments. But I do agree it seems like it’s worse in this disease, or at least similar poorly understood post-infectious diseases, where there’s stigma, no treatments, and ambiguity about what the disease is and who has it.

One encounter that has stuck with me was running into my wife’s co-worker at Best Buy. She had recovered from CFS following a Candida diet and was very aggressive in telling me I needed to go on this diet and was neglecting my health by not doing so. (Never mind that I had already tried it extensively).

That kind of attitude and certainty is easier to tolerate from outsiders, but, for me at least, it’s much more corrosive when it comes from patients or experts. Some spaces are better in this regard than others, S4ME for example, but I can never totally steel myself against the apparent popular view that not pursuing treatments is either naive or some kind of personal failing.

 

yes its dreadful, and why i only really access S4 for ME related conversation, everywhere else seems to suffer from at least some of this problem. Even MEA fb. At least its safe here on S4.

 

I have noticed that the Guardian article has been amended since the original posting.
The following chages were made:
1. Syndrome has been included in the title
2. Between 2007 and 2016, only £10m of UK government funding was doled out for the study of ME/CFS
3. Added: ME was recognised as a neurological disease by the World Health Organization in 1969

 

The Graun is very responsive when there is a good case for amending an article.

 

Okay, how about “responsive when there is a clear and uncontroversial case for minor amends to an article”. Every writer and editor is defensive when the main thrust of a piece attracts complaints.

I was thinking, though, that someone should get in touch with whoever curates their style guide (it’s published online for everyone to use) and get something added about chronic fatigue not being an elegant variation of ME/CFS. Someone at one of the associations, or someone who tweets.

 

When I was still making bank(living at home and earning about 700 euro's p/m gheghe) I would've loved to have the knowledge I know have. It would've all gone straight to Solve or some organization like that. That might be a regret, if you could call it such. One of the things that bum me out at the moment is that it's very hard to start any sort of fund-drive or whatever when you're struggling to just get through the day and are pretty much invisible to the outside world.

 

Well there is this….for data lovers

https://twitter.com/user/status/1679252293408157696

 

In my view, it is probably best that DecodeME, which is a rigorous scientific study, is not mentioned in an article on a pseudoscientific approach to treating ME/CFS so as to not run the risk of putting them on an equal footing. IIME’s research could have been mentioned given the topic, though perhaps the journalist is not aware of Prof Carding’s work.

 

Have they even published any results from their n=2 study? That was reportedly started in February and by the original plan should be well and truly over by now. Of course, in the intervening time, they have extensively modified the protocol and otherwise discussed publicly at least half a dozen additional drugs and supplements. Methylene biue? Nicotine? Peptides?

I cannot see it happening in Australia for similar reasons. Maybe the shady ones that skirt regulation on a regular basis.

Not only this, the video that accompanied this recruitment drive says

Alarming that unqualified people will be training even less qualified people on a medical protocol.