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

[bobbler]

One of the comments:


Doctors so often don't seem to get that being 'reassured' that everything's fine when you can't do a quarter of what you used to do and feel bloody awful isn't actually that helpful. Reassurance featured heavily in clinical guidance for managing Chronic Fatigue I was looking at the other day - so patronising.

Here's another one, I've put in a spoiler cos I stopped reading at that point, and maybe you don't need to see it right now.

Spoiler: a doctor gives advice on things s/he doesn't know about

A few tactics for steering the conversation per your discretion:

"I understand it must be frustrating for your body to not feel like it was" And "Being vaccinated shortens the course" And "People do recover, it just takes time. But it is safe." And "Regular exercise helps restore the body's metabolic strength and balances the ANS"

• evidence based reassurance
• gives an empowering route
• honestly, everything gets better w/ exercise
• they leave feeling heard

Or "Getting vaccinated helps resolve the symptoms. Which arm do you want it in?" "Maybe you're weak because your lazy?

• they will leave.

yes they don't get what is really going on in that interaction. because it is a tilted communication technique and power balance they don't realise that the response isn't to being actually reassured but being given the message 'that's my job done - i hope that you are reassured I have checked what I need to' or other things

And your second comment well it underlines how clueless those who are manipulative types can be to that being what they've either become or are. They back fill the reason for what they want to say/do with post-hoc justification. Either that or this person really thinks they are being clever and among kindred spirits, but I'm heartened that maybe that isn't the full case on that thread.

the bullet-points are all very misogynist's though charter aren't they - bless them for geeing up those others who just needed that cheerlead, even though whoever was hearing it could probably sense the latter bit was exactly what they meant and were thinking behind the fakery anyway. it's all a bit sad but I guess sometimes it comes from empathy issues, and lacking that skill of insight due to them having suffered trauma themselves/not coping with the job vs the culture and hours and so on - as I don't know enough about reddit I never know what is dark humour mixed with projection vs genuinely intended?

 

[Mij]

Dr. Keagen's responses on X
I find keeping up with the emerging research on long-covid a bit daunting, and I teach it. The core to caring for someone with long-covid is (1) believe them, (2) take a great history, likely focused on chest pain, fatigue, brain fog, mood disorder, difficulty breathing

3) rule in/out the MANY conditions triggered by covid (blood clots, MI, strokes....) (4) manage any that come up (5) look at what's left and keep going, suggesting customized treatments (this is where it gets tricky) (6) help the patient prevent a y future covid infection

 

[Yann04]

I randomly stumbled across a post in the medicine community discussion the MTHFR gene mutation, and wow, these medical professionals have so much stigma towards ME/CFS related diseases.

In reply to the post complaining about patients being diagnosed with MTHFR mutation. The top reply is:

Interesting, I am a third year student and I had a patient with chronic lyme, bartonella, babesiosis, etc diagnosed from a functional medicine doc who also had MTHFR mutation listed in her chart this week

And then people follow up with basically every diagnosis they see as “bullshit”:

Where the hell is the Ehler-Danlos diagnosis?

Next to the 14 allergies

And don't forget POTS

No fibromyalgia? Chronic fatigue syndrome?

POTS???

Next to adrenal fatigue

…

It is so weird to step into an online community of medical professionals and see conditions ridiculed. Aren’t these people supposed to be helping?

Instead of some of the dodgier studies on how pwME use the internet, they definitely need to study how MD’s act in anonymous forums and are ripe with ableism and, frankly, hate for patients.

 

[Lou B Lou]

I randomly stumbled across a post in the medicine community discussion the MTHFR gene mutation, and wow, these medical professionals have so much stigma towards ME/CFS related diseases.

In reply to the post complaining about patients being diagnosed with MTHFR mutation. The top reply is:

And then people follow up with basically every diagnosis they see as “bullshit”:





…

It is so weird to step into an online community of medical professionals and see conditions ridiculed. Aren’t these people supposed to be helping?

Instead of some of the dodgier studies on how pwME use the internet, they definitely need to study how MD’s act in anonymous forums and are ripe with ableism and, frankly, hate for patients.

That would be a fruitful subject for an incisive and intrepid journalist. How can NHS Drs provide safe and ethical services to the public when they harbour and express such prejudices against patients with certain diseases, especially diseases that primarily affect women, and how can the NHS (+ Royal Medical Colleges etc) then claim to apply the 2010 Equality Act. And what does the NHS (Royal Colleges etc) do to address the inequalities in medicine, to reduce the prejudices of Drs towards certain patients, certain diseases, especially those which predominantly affect women.




https://www.equalityhumanrights.com/equality/equality-act-2010

'The [UK] Equality Act 2010 came into force on 1 October 2010. It brings together over 116 separate pieces of legislation into one single Act so that it is easier to use. It sets out the personal characteristics that are protected by the law and the behaviour that is unlawful. Simplifying legislation and harmonising protection for all of the characteristics covered will help Britain become a fairer society, improve public services, and help business perform well.'



Equality Act 2010 (UK)

Types of discrimination ('protected characteristics')
It is against the law to discriminate against anyone because of:

• age
• gender reassignment
• being married or in a civil partnership
• being pregnant or on maternity leave
• disability
• race including colour, nationality, ethnic or national origin
• religion or belief
• sex
• sexual orientation
  
  https://www.gov.uk/discrimination-your-rights

.

 

[Sean]

Instead of some of the dodgier studies on how pwME use the internet, they definitely need to study how MD’s act in anonymous forums and are ripe with ableism and, frankly, hate for patients.

A particularly nasty and gutless form of bigotry, that is getting very close to hate crimes at times. Sometimes even crossing that line, IMO.

 

[Jonathan Edwards]

It is so weird to step into an online community of medical professionals and see conditions ridiculed. Aren’t these people supposed to be helping?

There is no excuse for such ridicule.

But I can see why doctors would get fed up with patients claiming to have MTHFR mutations and this and this and this... They will have been told that by a private practitioner, very likely of some quasi-medical camp like Functional Physician or Naturopath or Osteopathic Physician and almost certainly most or all of it is garbage. As far as I know almost everyone has MTHFR mutations - or at least nearly half of us.

The fault lies primarily with the physicians who make this stuff up - and yes, adding in EDS for good measure very often. But I do think patients have some responsibility for being credulous. We all have to look after our own health. If someone falls foul of a loan scam we think it is partly their fault. I think the same applies to an extent to health care.

ME/CFS is quite different from all these strings of diagnoses, in that it simply describes a group of people who we know exist who have disabling illness. The others imply some sort of explanation, which is usually nonsense or inapplicable.

Medical personnel should not be ridiculing patients but it is a pity that they are given so much opportunity to do so.

 

[Lou B Lou]

The fault lies with the Drs who feel free to ridicule, denigrate, mock, to express and incite hatred towards certain groups of patients. Those groups of patients (especially pwme) are framed by those Drs, and then by the media, then by anyone who wants to join in, as legitimate targets for prejudice and hate, neglect and abuse.

 

[Nightsong]

But I do think patients have some responsibility for being credulous. We all have to look after our own health. If someone falls foul of a loan scam we think it is partly their fault. I think the same applies to an extent to health care.

I suspect the majority of patients will just assume that a private specialist will be better informed, more qualified and less time-poor than the average NHS GP. How is the average patient to know what is widely accepted and what is a particular doctor's own personal obsession or pet diagnosis? That level of discernment may be common among some S4ME members but it is not in the general population. And very few ordinary patients would believe how much gibberish there is in the literature.

Anyone with any more than very mild ME will have to keep searching until they find an acceptable answer because it is so very disabling. Hopefully most will eventually stumble on the correct diagnosis but I'm sure plenty will end up in a diagnostic cul-de-sac and I do not think they should be ridiculed for that. (If these quotes are from r/medicine, it's a cesspit.)

Over the past number of years I've done the rounds of private ME specialists. One well-known one recommended that I try a vagus nerve stimulator and to avoid all vaccines. Another - employed by AfME's clinical service - openly compared ME to FND. While I have the kind of background that makes me take all of that with a huge grain of salt most of those particular doctors' patients will accept it at face value.

Even most well-informed and sceptical patients with a scientific or medical background will probably have tried a few unevidenced treatments. The desperation can be very real. After very nearly 20 years in I've come to the conclusion that I will probably always be ill but most patients are not going to accept that.

If the medical establishment wants to reduce the incidence of quackery they should stop abandoning whole groups of patients and stop recommending "treatments" that are themselves nearly as pseudoscientific as osteopathy or naturopathy. Every quack who thrives represents a tacit admission of failure by mainstream medicine.

 

[Trish]

The fault lies primarily with the physicians who make this stuff up - and yes, adding in EDS for good measure very often. But I do think patients have some responsibility for being credulous. We all have to look after our own health.

If all the patient organisations, organisations like NIH, and the doctors whose advice they promote would stop suggesting EDS, MCAS, even neck diagnoses like CCI/AAI etc are credible co-diagnoses/causes of ME/CFS, then I would accept that patients bear some responsiblity.

So far you are the only clinician/scientist I have seen being so clear on this subject. While that's the case, I don't think it's fair to place any blame on patients for accepting these diagnoses from doctors, and telling other doctors about them.

 

[Solstice]

If all the patient organisations, organisations like NIH, and the doctors whose advice they promote would stop suggesting EDS, MCAS, even neck diagnoses like CCI/AAI etc are credible co-diagnoses/causes of ME/CFS, then I would accept that patients bear some responsiblity.

So far you are the only clinician/scientist I have seen being so clear on this subject. While that's the case, I don't think it's fair to place any blame on patients for accepting these diagnoses from doctors, and telling other doctors about them.

Also, if they don't want us shopping for help, then get us the help we need through the proper channels.

 

[Mij]

A couple of days ago on X there was a patient dx with M.E who posted information about CCI/AAI, MCAS, EDS that received many replies from pts and doctors thanking her for her link to Unrest. This appears to be going strong when I thought it was over.

I wanted to post the X thread here when Wyva asked if this was still being discussed on social media but decided not to.

 

[Yann04]

EDS

Out of curiosity what’s the issue with EDS. Isn’t it a group of genetically testable diseases — which would make the diagnosis legitimate.

I do understand there is lots of unproven stuff going around about people actually having had spine problems and not ME or something of the sort.

 

[Jonathan Edwards]

While that's the case, I don't think it's fair to place any blame on patients for accepting these diagnoses from doctors, and telling other doctors about them.

I think that is fair. So I guess that my conclusion that there is an urgent need for some sort of consensus amongst the medical profession, in the document I hope shortly to publish, makes sense.

It seems to be whack-a-Groundhog Day all over again , if that isn't double tautology.

Also, if they don't want us shopping for help, then get us the help we need through the proper channels.

The only problem with that is that it is not fair to ask people to ask for help when nobody knows what would help. They just end up feeling forced to send you to one of those specialists or rehab centres.

 

[Jonathan Edwards]

Out of curiosity what’s the issue with EDS. Isn’t it a group of genetically testable diseases — which would make the diagnosis legitimate.

EDS is a group of monogenic genetic diseases, most of which we know the gene for and are easily tested for. There are 13 main types. Type 3 was assigned to people with hypermobility and nothing much else in the days when the genes were not known. It turns out that very few people with just hyopermobility have an identifiable single gene defect. So the rest are almost certainly not EDS after all. The term 'hEDS' is therefore unwarranted.

For the last 20 years, based on a couple of weak papers, there has been a claim that people with ME/CFS are more likely to be hyper mobile. But the only reasonable well done studies fail to show any link. And, as said, it isn't EDS anyway. As far as I know EDS is not associated with symptoms like ME/CFS, although some people are badly disabled for other reasons.

 

[Lou B Lou]

I think that is fair. So I guess that my conclusion that there is an urgent need for some sort of consensus amongst the medical profession, in the document I hope shortly to publish, makes sense.

It seems to be whack-a-Groundhog Day all over again , if that isn't double tautology.



The only problem with that is that it is not fair to ask people to ask for help when nobody knows what would help. They just end up feeling forced to send you to one of those specialists or rehab centres.

'The only problem with that is that it is not fair to ask people to ask for help when nobody knows what would help. They just end up feeling forced to send you to one of those specialists or rehab centres.'



It is Absolutely Fair for *Patients* to ask *Doctors* for help! Most ME patients don't know what could help them and what would harm them. It is *The Responsibility of Doctors* to treat patients with respect and consideration, and if they don't know what is wrong with the patient and what could help, then to seek to find out. That rarely happens as we know, and the Very bad behaviors of Doctors drives ME patients out of the NHS.

Blaming patients in any of this is beyond the pale. Patients will seek alternative diagnoses and alternative help *Because the majority of Doctors/Medical Profession/Medical Establishment* have Failed ME patients.

.

 

[Solstice]

The only problem with that is that it is not fair to ask people to ask for help when nobody knows what would help. They just end up feeling forced to send you to one of those specialists or rehab centres.

The guy that first diagnosed me told me there was nothing he could to help me. Which is devastating but also absolutely fair imo. I think a lack of this sort of honesty is one of the reasons we're still up the creek without a paddle.

 

[Mij]

Admitting they don't understand M.E or that they haven't figured it out yet is not the same as dismissing the patient.

I can respect that.

 

[Yann04]

Hmmm. I know most of this community is of the opinion that the diagnoses such as MCAS and EDSh are not legitimate. But I’m wondering what people would recommend to those who have been diagnosed with those conditions, and their experience fits exactly with the literature?

For example my mum is heavily disabled by an illness diagnosed as EDSh. There is no other found explanation for her symptoms. She might fit the ME diagnosis — she fits IOM but not CCC or ICC. She ticked every single box on the EDSh diagnostic criteria, and my brother has inhereted those exact characteristics from her. Her mother was disabled by said symptoms too.

I’m not at all familiar with the scientific literature behind EDS-h, nor am I familiar with medicine in general, so excuse if this is dumb rambling. But the only way she gets support and disability is thanks to that diagnosis. In fact, she was erroneously diagnosed with burnout and depression beforehand as no explanation for her symptoms were found, but upon seeing a therapist — they said she clearly had a physical illness. How is she expected to better navigate this situation, than getting an EDSh diagnosis and accepting it? Especially given she has been going to doctors for a decade and they have found no illness.

 

[Jonathan Edwards]

if they don't know what is wrong with the patient and what could help, then to seek to find out.

Yeah but nobody knows what. And if you seek hard enough you will find all sorts of made up stuff.
At some point everyone involved has to stop and think whether they really believe what is being sold them. I appreciate that the medical profession have got this wrong, but I think more in terms of pretending there is help to give than in not going looking for it.

 

[Nightsong]

The times that I've used the services of private specialists, it hasn't been about managing the core features of ME. I've needed help mainly with dealing with the DWP, managing my chronic migraines at times when NHS clinics have either insisted I travel to them in person (which I can't do) or where services were on hold during the pandemic, and managing my severe sleep problems.

After finding an NHS pain-management & headache-disorders centre that was willing to treat me remotely I've needed the services of private doctors far less, but I don't really regret it: despite the expense I've been able to try CGRP antagonists and anti-CGRP+R mAbs for the migraines that I've had most of my life, trial some medications for my sleep problems, and I managed to get PIP (which would've been much more difficult to get with just my GP involved). Occasional quackish comments aside I think it has been worth the expense, and prior to the pandemic I simply wasn't able to access a lot of care because all NHS services used to insist that I travel to them for face-to-face appointments whereas all the ME specialists understood perfectly well why I couldn't.

Not sure I can generalise too much from my own experiences but access to care, I suspect, is a significant reason why many pwME use private specialists. It was the principal reason in my case.