interview about DecodeME with Professor Chris Ponting

[@sarahby7399]

Thanks for the interview Chris and David. Please pass on my best to Simon and let him know he is much missed in the social media domain. 17,000 participants is impressive, and the evidence based approach SO REFRESHING. Dispute is normal in life; do we then have to go to war because of it? Thanks to everyone participating and for the integrity of the work.

[@tamzinmole530]

thank you for the update, Dr Tuller and Prof Ponting.

[@nancyblake1679]

The history of ME/CFS can suggest some possible explanations for the complicated and often hostile attitudes to people with ME. As a PWME from 1987, and also a psychotherapist, this is an interesting topic. When I describe the symptoms of ME (my muscles just stop working after minimal effort, I have to lie down all the time, I can’t walk far, carry thing (wet laundry) stand up long enough to cook, or iron, or hoover….I begin to sound to myself like a whining hypochondriac using excuses to get out of responsibilities. If even I sound like that to myself, it is easy to understand why I sound like that to others. But there are many other historical and cultural factors. Freud’s theories about the origins of hysteria (basically, women suppressing their sexual feelings and converting them into symptoms) are very attractive to anyone having a reason to want to believe them. I suggest anyone interested read Freud’s case study, ‘Dora’ to see the origins of this theory. A fourteen-year-old girl running away from the advances of an older colleague of her fathers (she was alone with him in an empty business premises supposedly to watch a parade, when he tried to embrace her) is said by Freud to be a perfect example of an hysterical reaction - suppressing the sexual arousal she must have felt. (Make up your own mind about this!) In January 1971, two articles by psychiatrists McEvedy and Beard were published in the BMJ purporting to prove that the 1955 Royal Free Hospital outbreak of ME was only the outcome of ‘mass hysteria’. McEvedy had obtained permission from Dr. Melvin Ramsay, the Infectious Diseases consultant of the time, to visit the hospital, interview patients who were still there, and see his notes from the time. McEvedy spent a few hours reading the notes of patients whom Ramsay had already dismissed as probably anxious respondents to so many of their colleagues falling ill. He declined to interview any patients. The article were based on this amount of research. That same month, January 1971, a brief article appeared in TIME about the amusing reaction of some doctors in England who were studying an illness, compared to medieval outbreaks of dancing mania. Not having found a germ to explain it, these doctors were now looking for something smaller - a virus! What clinched the fact that this silliness was hysteria was the fact that most of the victims were women. The illness was not named, the article was not published under anything concerning health, medicine, or science - but Behavior. No reference was made to the British publication. At that time, the circulation of TIME was 4 million, and it was considered the most influential publication in the English language. (Encyclopedia Britannica) (I wish someone could explain this interesting coincidence.) Another historical bit - the 1934 outbreak in Los Angeles occurred at a time when polio was still prevalent, and people were very frightened about it. ME at that time acquired the name /benign myalgic encephalomyelitis, because, unlike polio patients, those very ill with ME did not progress to the permanent paralysis of those with polio, and it could be that these patients attracted hostility because they were felt to have been miming those with ‘real’ polio. Following the money, psychiatrists have acted as well-paid consultants to medical insurers, who benefit financially if an illness is labelled psychiatric, in which case disability payments continue for only two years, and not medical, in which case disability payments continue for life. Anyone wishing to find out who some of these men are can first consult the authorship of the PACE study and follow it out from there. Some are still influential in the UK medical establishment. The UK was very quick to set up 50 Long Covid rehabilitation centres, based in gyms, and offering psychological support and personally tailored exercise programs. At the same time, the priority initially given to medical research into Long Covid was dropped, but apparently research into non-medical treatments has been available. This was discussed in an all-party Select Committee on Long Covid. The credibility afforded to men versus women is embedded in our language - I found myself inadvertently engaged in this…”When men report symptoms…….. When women complain of symptoms…….’ I was making the point that men are believed, women are assumed to be exaggerating or lying..but then I looked at my own words….. There are very complex and deeply embedded roots which underlie the generally skeptical or even hostile attitudes which ME/CFS so often inspires, and which are now being experienced by Long Covid sufferers - and, it must be said, the funding difficulties of doctors and institutions which are looking at the physiological side. (Listen to Professor Resia Pretorious to follow this through…)

[@AntoniettaCapon]

Thankyou for your research. My daughter was told she had ME at 15. She has managed it for many years but now age 35 a mother of 3 having had Covid 3 times her symptoms have all come back, she is so ill. Can she be part of your study ?

[@GM-yq5wk]

I’m intrigued with your background in this science and how I can find out more about you as ME isn’t really having much success in the medical field?? Seems so many with this

[@georgelisowski8378]

Many thanks for the great interview! One doubt I wanted to raise, however, is concerning a different possible source of selection bias. Prof Ponting mentioned that his finding was that more people with me/cfs tended to get worse over time. But surely people who are getting worse would be more likely to volunteer for this sort of survey/study (if you’re affected by a problem more, you have more motivation to study/address/solve it) and that wouldn’t necessarily reflect the trajectories of the overall population of me/cfs sufferers? (My own personal experience as an ME/CFS sufferer is that it’s been up and down, but the overall trajectory has been moderately upward.)

[@sarahby7399]

Are you male?

[@oliverbird6914]

I'd say people getting worse don't wanna leave the house

[@georgelisowski8378]

@@oliverbird6914 Indeed - it could be another possible source of selection bias when it comes to donating DNA samples! But in relation to completing an online survey, I would have thought that few me/cfs sufferers were so severely ill that they were unable to go online, so it would be less of an issue.

[@oliverbird6914]

@@georgelisowski8378 there's many many that can't go online The severe..around 25 percent

[@kerrynewnham8946]

It has been shown previously that women are more impacted than men. It is perhaps why U.K. advocacy has failed because the needy are female and yet most of the reps are male, higher function on average, less burdened on average and less likely to have comorbidities such as POTS. These make reps are without connection to or sufficient experiences of or even the empathy for those who Are more needy. Which is why severe ME had been grossly under represented despite being most stricken and vulnerable

[@truemecfsuncensored1022]

David I respect your work, but question your approach. These research experts are missing/ignoring the underlying cause of origination.

[@sarahby7399]

Isn’t that because they are not looking for cause in the first place?

[@MP-uo6qd]

what is the underlying cause of origination???