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Boooo... hiss... booo... hiss.... The easy way out, take the money and run. This is not medicine. P.S. @Woolie this is not directed at you.

I agree James, and I would add that it is starting to get branded as sustainable health care, as a way to prevent the expenses of diagnostics and medical treatments. Instead what is being offered is less expensive group therapy, CBT and soft medicine (acupuncture, alternative therapies, etc)

1- biomarker 2- establishing subsets 3- large, international, multi-center cohorts studies 4- replication of the brain inflammation PET studies 5- auto-antibodies studies, large cohorts 6- auto-immunity 7- research surrounding POTS. Comparing POTS patients with and without ME 8- system biology...

I agree with the few out there who have expressed concerns in calling this disease by a symptom, as it puts emphasis on the symptom and sometimes doesn’t quite describe the experience of the patients bearing the burden of the disease. I am one who stay away from decribing my disease as...

That’s weird because i tried it just now and it works for me. Could it be because you are both from the UK? Could it be Science Media Center censuring this info? Regardless, I have copied the entire article here. There is a video and the narration is the transcript I have provided.

This was in my news alert, some press coverage about Dr Klimas’ work with Gulf War Illness. https://www.winknews.com/2018/07/04/breakthrough-in-gulf-war-illnesses-from-exposure-to-chemical-toxins/

Clinical trials for GWI are underway. As you know science takes a long time. Dr Klimas’ group has been very astute in incorporating ME patients as comparison to their GWI cohort, which has been helpful in understanding both diseases.

The psych lobby shows up in periods of great threats. Timing is everything. It reminds me of when ME-ICC got published. This is when Wessely decided he needed to intervene and claimed he has received death threats. In this current case, I think all of this PR on Twitter by Sharpe was related to...

Here is my opinion: the core of what medical care should focus on is the biology: understanding what is happening in the body, addressing the most disturbing symptoms and tryin to modify the course of the disease. The medical bodies should be relieved of doing education for the patients and...

There is something very wrong with this picture.

That would be the one.

Hi @TrixieStix, Plaquenil is a great tool in rheumatology in decreasing inflammation. It does not work right away, so you need to wait a good 6months to judge whether it is helping you. I took it for 10 years following an episode of small joint pain (fingers and toes) I was not formally...

This conversation that Sharpe has on Twitter reminds me of a quote. I forgot who said it but i am sure someone remembers: ‘Damn patients, they don’t want to get better’

Thank you so much to the attendees including @JaimeS. i have a question for you: have you heard the concept of ‘Central Sensitization Syndrome’ any time through the day from the experts on Saturday? i am sorry to ask again, it’s just that an entire community of patients is directly affected by...

It doesn’t matter how beautiful the words are. They are aimed at denying people from competent medical care. ‘Holistic’ is currently being used instead of bio-psycho-social. It caters to the current demand, and it fools people to believe they are receiving good care.

I wonder if the MP’s could ask Lancet for a retraction?

I myself volunteer to try drugs that are potential treatments as suggested by the ME experts hthe real experts) Cyclophosphamide comes to mind, but there are other drugs such as the ones used in rheumatology.

May i ask how Mike Godwin got involved in a twitter PACE debate?

I had the persantine test, where they induce effort without being on the threadmill. The nuclear test is lookimg at the general heart health and to see if you have blocked arteries or whether there are any heart pathologies to be comcerned about. There is a 100% certainty that us patients with...

Congratulations @andypants!