Reddit - Interesting posts on Reddit, including what some doctors say about ME/CFS

It may be difficult because, as Trish says, there is so much muddled thinking everywhere.
But the first thing I would say is that 'the literature' on MCAS and hEDS is by and large fringe pseudoscience put about by physicians who make a living out of giving people these labels.

MCAS may be a useful term for a very small number of people with rare abnormalities of tryptase or something but 95-98% of people given this label either just have allergies, or their problems are nothing to do with mast cells. I am pretty sure that the term is not useful. Virtually all the literature comes from a Dr Afrin, who I find very unimpressive.

The situation for hEDS I have explained I think. I haven't seen any hEDS diagnostic criteria but I think if there are any they are almost certainly made up by the same fringe physicians. An EDS diagnosis has nothing to do with fatigue or generalised unexplained pain or any of the things we are familiar with in ME/CFS.

It is vanishingly unlikely that someone should actually have both EDS and a genetic mast cell disorder - the chances would be about one in a million. OK that may mean there are fifty people in the UK who do have both but I very much doubt they would have any symptoms resembling ME/CFS. These two diagnoses are always given together by physicians who make things up I am afraid. I have to call a spade a spade.

I can understand that people feel that they get support from doctors who make these diagnoses. I can understand the sense of being validated. But to me it is all a scam. For me a diagnosis of ME/CFS is validation enough simply on the basis that it describes a disabling illness that large numbers of people report, with not the slightest indication that it is, on their part, made up.

I think it quite likely that 80-90% of people diagnosed with 'hEDS' simply have ME/CFS and mobile joints (which are quite normal in themselves).

 

Apologies for just popping in --

not able to participate in the discussion but the question about what could doctors do to help people with ME/CFS asking for help when there is no treatment reminded me of a forum discussion (members only) :

"As long as there is no treatment for ME, what can doctors do to improve patients' quality of life?" --

Think there are some sensible suggestions that negate the idea that patients asking for help urge doctors to do pseudo-medicine.

 

I think part of our problem with ME is that some medical professionals think exactly this way about ME and effectively want to shut down the ME/CFS diagnosis.

It’s a real challenge for everyone.

 

I just stumbled across this and sent it too my mum five minutes ago haha — cheers

 

The trouble with that report is that it is only two families and the knock out mice had defects in multiple organ systems - i.e. not hEDS. But a partial functional variant might produce just hypermobility.

What needs to be remembered is that genetically based EDS has, as far as I know, nothing whatever to do with the sort of fatigue and pain you get in ME/CFS. Therehave always been some families with what look like monogenic pedigrees and some other genes have been found like tenasoin variants I think, but as far as I know none of this is relevant to our discussions here.

 

Probably not the right thread for it, but they did look at 197 unrelated hEDS patients a found a third has this kind of variant.

 

True, but pwME also have to be prepared for them to say, "All we can recommend is pacing."

Some recently diagnosed pwME will find it hard to accept that almost nothing is known about the cause of their symptoms or how to treat them, and go off looking elsewhere. But there are doctors who're good at explaining, for instance, that single studies rarely add up to evidence—I was way too impressed by papers like this when I was first diagnosed, until one of the GPs at our practice grinned and explained that if he wanted to claim eating celery causes chickenpox, he could probably find published research to back it up.

We need more people like him, who'll approach it with good humour and understand that most recently diagnosed people aren't equipped to assess research credibility. It doesn't mean they're stupid; it's natural for them to look for answers, and working out who and what to believe is quite a learning curve.

 

Yup, like when I tried educating my M.E doctor and Virologist about the hypercoagulation theory for M.E and was warned not to become their guinea pig for their pet theories. They were very kind about it because they have seen many desperate patients in their careers.

 

These delusions of having control over your own health are feeding into societal ableism and abuse towards us. Healthy people assume that those of us who are unhealthy didn't take care of our health, didn't work out etc. As if any of those things matter. You contract a virus and never recover. Most people find it too horrifying to consider such a possibility so they cling to these delusions.

 

Uh, duh, yeah. Duty to report.

If you didn't report, wouldn't you be liable (and liable to lose your license to practice?)

 

Interesting to read this in conjunction with the other thread about how doctors need more self-compassion because it's so stressful for them having to deal with patients who have unexplained symptoms.

 

This new thread on the hospitalist subreddit about a person with LC/ME is one of the most upsetting I’ve ever seen. Truly frightening.

 

https://www.youtube.com/watch?v=6-A4zT8wp8E

The Unfixable Thought Machine | David Firth's Health Reminder (Ep 3)

 

Congratulations, you’re finished your medical education. You now know everything you will ever need to know, and if you can’t explain it, the BPS model can. You’re the best - keep up the good work! /s