How the ME zealots tried to terrorise me Dr Max Pemberton

[Riley]

What type of column is this anyway? It reads like disjointed, random nonsense.

It reminds of the old guy that used to have a short segment at the end of 60 minutes.

 

[worldbackwards]

What type of column is this anyway? It reads like disjointed, random nonsense.

It reminds of the old guy that used to have a short segment at the end of 60 minutes.

 

[Bob]

This week, a major Oxford University study suggested a combination of two types of treatment, graded exercise therapy (GET) and cognitive behavioural therapy (CBT), can offer sufferers significant help, making them less tired and more able to complete everyday tasks.

Factual error. CBT and GET made no difference to ME/CFS patients according to the new study.

But this apparent good news was met with hostility from a minority of sufferers, who are furious at the suggestion that the answer might involve psychotherapy.

So the factual error is good news?

I’ve never met a doctor who doesn’t accept that the symptoms of ME/CFS are incredibly debilitating.

Really? Then you clearly haven't met many doctors, because we've all met plenty of doctors who haven't got the slightest insight into our lives.

[Sir Simon] developed the treatment programme now endorsed by the Oxford study.

He did?

ME activists will claim that the condition’s caused by anything rather than the mind — viruses, the immune system, toxic chemicals . They’ll seek a cure from any other doctor, but not a psychiatrist.

And it’s just so misguided.

Imagine you’ve gone to the GP with a rash, asking to be referred to a dermatologist. But the GP explains that actually you have psoriatic arthritis — a joint problem that causes rashes — so the best person to see isn’t a skin doctor but a joint doctor.

By this logic, Max Pemberton believes that psychiatrists can cure cancer if there are any psychiatric symptoms present in cancer patients. Bizarre.

 

[TiredSam]

The energy these ME activists have is extraordinary.

Is there any other way to read the above comment than as an unprofessional, snide remark insinuating that ME patients are faking their lack of energy, because they obviously have enough to abuse him and his colleagues?

Is it not a puerile, manipulative attempt to put us in a catch 22 position - if you have enough energy to disagree with anything we say about your illness, we'll take it as self-evident that you've been lying about lack of energy, label your disagreement as abusive, and portray you as such in the popular press.

How deeply unpleasant.

 

[Valentijn]

That may be the most bizarre photo of "CFS" that I've ever seen. But at least it's a change from a woman looking tired and constipated or exercising.

 

[worldbackwards]

Dead cat strategy : divert from the issues with "will you condemn, will you condemn..." Give me a name and I'll condemn them, otherwise piss off.

I'm sick of being lumped in with the amorphous construct of "The ME Community". If there's anyone doing this, they should be stopped. Would it be okay to throw crimes at the door of "the disabled community" or "the cancer community"? No, you'd ask for a name and if you didn't get one you'd wonder why.

I wonder if anyone would take our word for anything without evidence? Silly question. Personally I have an alibi. I couldn't operate a computer in 2011. Still, I must be guilty, I'm part of the ME community. The fact that GET made me worse is irrelevant clearly, because I can't have had it, I avoid psychiatrists, I'm supremely irrational.

God, you wonder why people get angry.

 

[Wildcat]

.
No one has actually seen the so called "abuse" on social media that the PACE Trial authors say they are receiving in the last few days. If its on social media then its in the public sphere - where is it? Has anyone seen it? Lets see how bad it is.

Fiona Fox of the Science Media Centre, who says she orchestrated the 'harassment' media stories in 2011 and 12, also is on record stating that the worst of the claimed harassment of scientists was Freedom of Information requests (some about the PACE Trial) and Parliamentary Questions. So lawful actions were conflated with, and so constructed as, 'harassment'. Patients and charities writing to the National Research Ethics Committee (as invited to do so by the NREC) to give reasons why the NLP Lightning Process trial on children (Dr Esther Crawley's SMILE Trial) should not be given ethical approval....... constructed as 'harassment' by the SMC and Professor Wessely.

No one condones abuse or harassment.

But Prof Wessely, his medical supporters, and media supporters, have a history of playing the victim in the national media at critical points in time, that co-incide with landmarks of ME bioresearch, the publication of the ICC, andnow, material that demolishes their research and policy.... and the "worst" of the claimed harrassment of 2011/12 turned out to be FOI requests and Parliamentary questions.

 

[user9876]

That may be the most bizarre photo of "CFS" that I've ever seen. But at least it's a change from a woman looking tired and constipated or exercising.

Perhaps the picture editor has a better idea about ME than the 'expert' Max and is saying some of us know its biological.

 

[worldbackwards]

What gets to me is the conflation of this severe abuse with a "vocal minority", which is saying that anyone who disagrees is automaticaly conflated with extremism.

Basically telling sick people "if you think like them about the treatments, you're one of the hardcore abusers. And you wouldn't want to be one of them now. WOULD YOU? EH?"

 

[Effi]

Maybe when one of us spots it we can provide a link here to the post so that it's easy for people to find and vote up.

hi @Sasha I'm a bit overwhelmed with all the things happening this week. I am in no state to be writing posts on news websites, but I'd be happy to give all the good ones a thumbs up, so they can go up in the list of comments so more people will see them. No idea where to find them right now. I'm sure there's more people like me. I thought maybe someone could make a thread with all the links to the comment sections where we can do that? Ever click counts, right?

 

[Sasha]

hi @Sasha I'm a bit overwhelmed with all the things happening this week. I am in no state to be writing posts on news websites, but I'd be happy to give all the good ones a thumbs up, so they can go up in the list of comments so more people will see them. No idea where to find them right now. I'm sure there's more people like me. I thought maybe someone could make a thread with all the links to the comment sections where we can do that? Ever click counts, right?

Probably enough if readers of this thread click - I don't want to overwhelm the boards and if the DM thread isn't too huge already (might be!) then it should naturally get votes that will keep it afloat. I'll also edit my original post with a link when the time comes.

This is a nice, easy thing to do for people who are too tired or befuddled to write comments.

 

[skipskip30]

What type of column is this anyway? It reads like disjointed, random nonsense.

It reminds of the old guy that used to have a short segment at the end of 60 minutes.

Funny you should pick up on that. The whole paper is actually disjointed random nonsense every day of the week!

 

[Sasha]

What type of column is this anyway? It reads like disjointed, random nonsense.

Reality doesn't seem to have played a large part in it - that's for sure.

 

[Sasha]

Must say, the comments are a bit slow being cleared! Wonder how many there'll be.

 

[Sean]

But what’s worst of all is that they pursue people who are desperate to support them.

Not enough buckets in the world to hold the vomit that bald faced lie brings up.

One leading researcher, Professor Simon Wessely, has now given up because of the abuse he received.

If only he would.

 

[SOC]

Imagine you’ve gone to the GP with a rash, asking to be referred to a dermatologist. But the GP explains that actually you have psoriatic arthritis — a joint problem that causes rashes — so the best person to see isn’t a skin doctor but a joint doctor.

You wouldn’t threaten to letter-bomb the GP, would you? You’d say thank you very much; what a relief I’m going to see the right doctor.

Imagine you've gone to the GP with a broken leg, asking to have it set. But the GP explains that you actually have a psychiatric condition in which you only believe you have a broken leg -- so the best person to see is a psychiatrist. The doctor doesn't do the necessary tests to demonstrate there is a problem because he claims that will only reinforce your belief that something is wrong with your leg. At most he'll do a CBC which comes up normal, a fact which he uses to claim that "there's nothing physically wrong with you", despite the fact that it has nothing to do with your broken leg.

You wouldn't go happily to the psychiatrist, would you? You'd say, "What the heck is going on here? You didn't find the broken leg because you didn't look. You just assumed I don't have a broken leg and that my condition is imaginary based on no evidence. I'm going to look for a doctor who can actually do what a doctor is supposed to do -- listen to me, do an x-ray to see that I have a broken bone, and set it. And you can bet I'm going to tell everyone I know to avoid the quack in this office who prefers to assume health conditions are psychosomatic rather than listen to patients and do the necessary diagnostics to figure out what's wrong.

Anybody else notice how these BPS folk are scrambling and falling all over each other in their desperation? They can't even keep their story straight anymore. Wasn't Sharpe saying the other day that ME/CFS is not all in our minds? But Pemberton is clearly saying it is, isn't he? Somebody forgot to give Pemberton the new script, I suspect. I can only hope this inconsistency of message is getting through to the general public and they start to wonder what exactly is going on here.

 

[user9876]

Imagine you've gone to the GP with a broken leg, asking to have it set. But the GP explains that you actually have a psychiatric condition in which you only believe you have a broken leg -- so the best person to see is a psychiatrist. The doctor doesn't do the necessary tests to demonstrate there is a problem because he claims that will only reinforce your belief that something is wrong with your leg. At most he'll do a CBC which comes up normal, a fact which he uses to claim that "there's nothing physically wrong with you", despite the fact that it has nothing to do with your broken leg.

You wouldn't go happily to the psychiatrist, would you? You'd say, "What the heck is going on here? You didn't find the broken leg because you didn't look. You just assumed I don't have a broken leg and that my condition is imaginary based on no evidence. I'm going to look for a doctor who can actually do what a doctor is supposed to do -- listen to me, do an x-ray to see that I have a broken bone, and set it. And you can bet I'm going to tell everyone I know to avoid the quack in this office who prefers to assume health conditions are psychosomatic rather than listen to patients and do the necessary diagnostics to figure out what's wrong.

Anybody else notice how these BPS folk are scrambling and falling all over each other in their desperation? They can't even keep their story straight anymore. Wasn't Sharpe saying the other day that ME/CFS is not all in our minds? But Pemberton is clearly saying it is, isn't he? Somebody forgot to give Pemberton the new script, I suspect. I can only hope this inconsistency of message is getting through to the general public and they start to wonder what exactly is going on here.

I heard a story recently about someone who did go to the GP with constant headaches and was told they were just stress headaches (I don't know if he was told to see a psychiatrist) but it did turn out to be brain cancer. The diagnosis was only made because he had a friend who was friends with the dean of the local medical school.

Another friend went to the many different GPs saying she felt tired and was dismissed with comments such as your too young to be ill and go and exercise. Max would say go to a psychiatrist. Turned out she had aplastic anemia and lacked blood.

I have more stories. But this is the problem with the default assumption that if nothing obvious is wrong it must be psychiatric.

To give a better analogy from Max it would be the GP sent the patient to the ENT doctor (or some other unrelated specialty) who treated them but it didn't change their rash or the treatment made it worse. But that the ENT doctor insisted that the person was better since they had been treated.

 

[SOC]

I heard a story recently about someone who did go to the GP with constant headaches and was told they were just stress headaches (I don't know if he was told to see a psychiatrist) but it did turn out to be brain cancer. The diagnosis was only made because he had a friend who was friends with the dean of the local medical school.

I've got one of those, really sad. A friend of mine kept going to the doctor complaining of chest pain and other symptoms. After a couple of months he was labeled an attention-seeking hypochondriac (or whatever the euphemism was at the time) because the doctor didn't believe there was anything wrong. By the time he was finally diagnosed at Mayo 9 months later his lung cancer was terminal. A long-time smoker and they didn't bother to look for lung cancer because they were so darned sure he was faking. He suffered for 3 months and left behind a young widow and a just-turned-2yo daughter.

I know nobody's perfect and sometimes diagnoses are unclear. What angers me is the arrogance and sense of superiority that allows fallible (like everyone else) doctors to label patients as weak-minded fakers when the doctor fails to accomplish their job. They just won't admit they can't figure out what's going on. They'd rather let people suffer and die. Thank goodness there are good doctors out there. It's unfortunate that the system so strongly supports the bad ones at the expense of the patients.

 

[Sasha]

Is something up with my browser? It's still showing me only three comments.

 

[Scarecrow]

Is something up with my browser? It's still showing me only three comments.

Nope.

Bet they've turned them off.