I recently registered on the Kings College Hospital/St Thomas Hospital patient app., which is called MyChart. It covers other hospitals and clinics too. It asks you to list existing medical conditions. It doesn't list ME properly. I have sent the following email to the MyChart email address in an effort to correct this. Has anyone else encountered this issue on NHS apps.? Have you had success in reporting and correcting it? Hello I recently registered on MyChart. I'd like to report a fault on the app. In the section which asks patients to report existing medical conditions it does not allow patients to enter Myalgic Encephalomyelitis (ME/CFS) (see NICE guidelines 21/10/21), but only Chronic Fatigue Syndrome, which is an outdated disease name. Strangely I was able to register that I was a member of the ME Association in that section on reporting existing conditions. I did this as it was the closest available accurate option, but it would obviously be preferable if the app were to reflect current NICE guidelines. I'd be grateful if you can let me know once the app has been updated. With thanks
I haven't used an app that asks questions, but well done for doing that! No doubt there'll be a local one here at some point, and there's a good chance I'll have to do the same. Yet another battle for us to fight.
Well done for raising that! But if I were you, considering your location (kings) I’d be inclined to be suspicious about why they asking about MEA membership... And to quietly untick that box... what do they want to know for anyway, do they ask people with MS if they members of the MS Society? I can’t put my hand on it now (but it’s def here on S4 somewhere) but membership of patient support groups/charities etc & particularly the MEA if I remember correctly, is considered by the BPS brigade as a barrier/hindrance to recovery & get you labelled as an “activist”. You might not care about that & wear an activist badge with pride, it depends on one’s personal situation how much prejudice you can tolerate & how much power drs have over you in your particular circumstances. And of course it Might be completely innocent that they ask that.... but just something to think about, you might not want the next doctor you see pegging you as “member of the MEA” before you even start, as (if they are misinformed as most are) that could make them think you as all kinds of erroneous rubbish about you.
I can’t remember any of the sources but I think both White and Wessely have said in newspaper articles that membership of patient groups/forums may make CFS [worse] and hinder any recovery. [edited to add missing word]
If I recall correctly, the BPS Movement does advise that belonging to a ME support group will hinder recovery. They believe that support groups will reinforce the so-called false illness belief they say pwME have. ( BPS beliefs vs. the beliefs of pwME.)
Theres a thread about it here Who was it that said being in support groups leads to poor outcome? | Science for ME (s4me.info)
Thanks all. Yes. I'm sure your concerns are justified. But I'm choosing to address this problem, initially at least, as a technical matter. I've already been through the Kings' CBT mill, years ago, and did not benefit from their treatment. I expect that department will already have classified me negatively. I've also had very good treatment for other health problems at the hospital in other departments.
Good approach. Obviously it's categorically not the developer's fault, but 'blame the computer' is always useful in situations where hackles might be raised by a head-on challenge.
Despite a shockingly high % of long haulers who report that such groups are the only place where they can get useful information, and that they are crucial to get support because of medical negligence. Even though many of those groups are shockingly bad, it's just that healthcare services are even worse. Little difference between this and arguing that going to food banks reinforces poverty, which I have no doubt is a thing many people believe and would even argue.
Presumably, to state the obvious, the BPS dislike self help groups because they make it harder to gaslight patients into believing that it is faulty cognitions that perpetuate ME, that ME is purely fatigue and not a wider condition involving varied aspects such as PEM, orthostatic intolerance and other symptoms that are harder to dismiss as psychogenic. Without any understanding of major factors in symptom variation the patient is likely to be much more vulnerable to the determined false cognitions of the BPS clinician.
Yes, absolutely the case that many would argue against any kind of helping hand, as they believe it only encourages laziness, and other negatives.
In the early 1990s, I received research information of the day, and all manner of other helpful info, from a ME support group. Absolutely none of this was forthcoming from any physician I consulted. Almost 40 years on, unfortunately, it's still the Dark Ages [ in GP consult rooms] where knowledge of ME is concerned. ETA: "in GP consult rooms"
Classic bullying tactics by the BPS brigade - the bully tactic to isolate the victim from sources of information and support. Patients are not victims per se, but the BPS regime does actively victimise us.
Your comment naturally brings to mind tactics used by possessive, abusive, violent spouses, who isolate and block off any contact with friends and family. The abusers narrow the other person's world, making themselves the ultimate authority on everything; the only person the abused spouse can turn to.
The really grotesque example of BPS Drs/HCPs bullying is them isolating ME patients by convincing parents of child patients, and partners/families of adult patients, that the BPS model of ME is the only and correct one, that the patient is not really physically sick, is psychosomatised, needs to exercise/be more active, that the patient is deluded about their own body and health. And yes, that is also a behavior pattern of abusive spouses/partners.
