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If an authority aims to decide how disabled or functionally impaired a pwME is, it's quite possible that they do not know ME is variable and unpredictable. A pwME may go along for even a few days appearing to do normal tasks. Then, fall apart and crash because they have done too much. It may...

From the article: " Physical illnesses do not require patients to prove impairments in levels of functioning, so it is unclear whether this is necessary for those with ME/CFS." This statement is puzzling. My understanding is, level of impairment is always considered important by disability...

OK, maybe a bit of a political comment: the fellow in the video says this new program/action by DWP will save the British taxpayers 2Billion pounds. So what is the plan for those savings? Reports often say a very small percentage of people receiving social safety net funds are fraudsters...

Ah, I think you may have it there @rvallee Again, blame the client, even though they are following medical expert's advice. Unless a psychologist also has a medical degree, it seems exceedingly unwise to provide any actual biomedical advice to clients.

Puzzling that excessive POTS was associated with greater baseline fluid intake, when ME experts say to help with OI try hydrating well. Can anyone explain this? Or, is my ME brain just not comprehending.

Thank you to these authors for their look at the big picture. Compartmentalized and linear thinking has seriously delayed advancement in diagnosis and treatment of PAIS. The author's say the common understanding of the outcome of viral illness is that the patient either recovers or dies. No in...

I can think of two patients who were judged attention seeking, malingering, or making a big deal out of symptoms. Both were fobbed off. One had leukemia and died shortly after finally getting a diagnosis. The other also had a life threatening condition. After medical system goof ups and...

Once again, do surface/minor biomedical testing. These tests don't indicate a problem. These patients are not viewed as worth the cost of more in-depth investigations. Then put them through questionnaires and an interview to help "confirm" initial suspicions that the patients are liars.

Quite some time ago, it seemed common knowledge in ME circles that if being atopic preceeded ME, then one's allergic condition would be more likely to worsen with ME. Mine did. As well, information at that time said atopy was seen to develop with the accompaniment of ME. I'm not saying these...

Yes, agreed. And, as a you have commented extensively on the history of ME (cfs) on this forum, I know you know that! :) I did wonder about a UK doctor giving such significance to a US epidemic. I would go with Melvin Ramsay's writings myself, and maybe go further back than that to other...

The Incline Village outbreak started in 1984: https://me-pedia.org/wiki/1984_Incline_Village_chronic_fatigue_syndrome_outbreak#:~:text=In%201984%2C%20there%20was%20an,north%20shore%20of%20Lake%20Tahoe

I think that's likely.

It's obviously not accurate nor scientific at all for holistic practitioners to tell clients/patients that all their previous clients are recovered, and back to work etc., due to a treatment or treatments. And yet clients may frequently be told this. This is a powerful message for the ill...

When one's holistic practitioner says everyone is helped, or indeed is recovered due to an alternative supplement or therapy, it is fairly likely the practitioner, as well as the client themselves, will engage in blaming the client if they do not improve.

Some holistic practitioners try to convince the client, the product has not failed, the client has. This also goes for alternative psychological therapies. ETA: gaslighting ETA#2: off topic, but when I think about it, the amount of gaslighting pwME are vulnerable to is enormous - possible...

Some "recovered" proseletisers speak too soon. I've met two of them. They were super enthusiastic, about how they "recovered", until their illness came back with a vengeance. I would say it's terrible to have this remittance/return cycle. I have never had a break from ME.

:laugh::thumbup::laugh:

As I said earlier, imagine someone labeled as a pwMUS, finally after many years, getting the definitive test that supports a biomedical diagnosis. What if, and I think this is quite possible, this biomedical diagnosis is considered a new condition, and not one suffered with, and dismissed by...

I'm always suspicious when a BPS approach is noted. Yes, there are many social, financial, and physical implications surrounding POTS. Well informed physicians are a start, but this can only go so far. Obviously what's needed is good biomedical research and effective biomedical treatments!

Oh boy, yes @Trish. It could just be some small downstream bits as you say. There are already sleep and pain remedies. OI treatments might be good. But in general, side effects from most drugs are a concern. And, as you say replication studies are needed. It could be a very long time before...