BBC: Chronic fatigue syndrome treatment 'should be withdrawn'

Its not interesting, its to be expected, he is willing to lie, throw anyone under the bus, do anything he has to to defend himself. From doublethink, contradictory statements, admissions he promptly "forgets" and so on to get through a particular situation then change his story to get through the next one. All to get his reality denying agenda cemented as the truth...

Protecting a house of cards is quite a challenge, and what he was doing was working great till now. He is surely very frustrated that winning strategies are not working as well today, his grip on the narrative is falling apart and from his perspective he is being unfairly persecuted.

 

Bill I'm far more sick than Lizzie who clearly is better & expects to recover. I commented in a detached not nasty critical commentary way on a forum (about how I felt some of what she said wasn't optimally useful for the community) , where I doubt she frequents. I haven't attacked her personally. I gave her fair do as to why she perhaps spoke in certain ways. It's curtailing free views & speech if that's not allowed AFAIC.

 

We have no way of ascertaining whether Lizzie reads the forum (or not). Being more (or less) well than another with ME/CFS isn't a license to be critical of them and I never called you out in particular (and I'm not doing so now).

Lizzie did not call our illness "chronic fatigue," but said in the context of having ME/CFS that she experiences exhaustion and chronic fatigue. Nothing remarkable there.

Trust me, I'm feeling my free speech is being chilled.

People like Lizzie are entitled to more kindness IMO.

If you are reading this Lizzie, I'm sorry you had to face this.

Bii

 

Let's hope the 22 year old can handle views on a forum and isn't too traumatised by a slightly critical comment. she said she went to a clinic which specialises in treatment of CF, not that she had CF as part of ME. I didn't feel I was being unkind. The name being reduced to CF is very common and had been a continual issue as we struggle to get recognition for multi system disease.

 

Where I was possibly wrong was that she said IF you get diagnosis good treatment there's hope and it doesn't last, which can be true. Obviously many in the community missed that boat.

 

Let's agree to disagree. Lizzie called her illness ME. She said she experiences exhaustion and chronic fatigue. She did not engage in reductionism in my estimation.

It is not unusual that people with ME/CFS to experience exhaustion or chronic fatigue.

My heart goes out to her.

Bill

 

In my humble opinion, any sub group without either PEM or severe brain fog is not a subgroup of M.E., it is a different disease.
2. Generally feeling tired for a long period of time is not the definition of any particular disease, it is a symptom of almost any chronic malady. It’s meaningless, but it’s also a way to create a large target for the bullsh tter industry.

 

I'm a bit late to the party, but I just wanted to point out that another danger in basing criticisms of PACE on the overly loose selection criteria is that it implies we believe there are at least two different illnesses: "real" ME and "all other fatigue", and it also implies that the second group may actually respond to CBT and GET.

Any person sick enough to qualify for the PACE trial is pretty sick. I don't want to see any of them subjected to this nonsense, CCC or not.

It might turn out that there's no genuine underlying dichotomy between those that meet CCC and those that meet broader criteria. They could lie on a continuum with CCC criteria picking out the more severe cases.

 

https://twitter.com/user/status/993976834382614530

 

Some leading ME researchers and clinicians say the treatment is safe and effective. They also say that if you don't have the treatment you'll never-the-less reach the same level of improvement as those who did receive it if you just wait one year's time.

Meanwhile, there is considerable anecdotal evidence that excessive exertion can result in long-term worsening of the condition. There is currently no way to determine which patients are vulnerable to this kind of harmful response.

Short-term worsening of symptoms (PEM) following exertion is a required symptom under the CCC (2005), the ICC (2011), and the IOM's SEID definition (2015), so the concept that excessive exercise could lead to a long-term worsening of the condition is not without foundation.

Knowing all that, what would be the prudent course to take when comparing the risks of a program of increasing exertion with the alternative of simply waiting a year to achieve the same results?

 

It isn't incorrect to to say that Prof Sharpe, or whoever made that statement, are leading in the regard that they've built their careers out of their research and they've been very influential. It's far from optimal that they're described that way, but I don't think it's something worth criticizing Newsbeat too much for, especially when they've actually been really helpful in regards to ME.

They also describe Dr Charles Shepherd as a leading expert, in their defence.

 

I think we as a community have been treated so poorly that we just seem to be happy with whatever coverage comes.

I hate to be a negative Nancy but I really feel like the coverage could and should have been so much better. ME/CFS isn't some completely uknown entity anymore. There have been countless well written and enlightening articles about ME/CFS and the entire history of CBT and GET (The Nature and Buzzfeed article are great examples). ME/CFS is an extremely complicated somatic illness, yet Sharpe is a professor of psychological medicine and has conducted some extremely abysmal studies on the illness that shows he has no understanding about ME/CFS at all. How can he be considered an expert?

Are homeopaths and acupuncturists ME/CFS experts because they ''try'' to treat patients?

I think not.

It's 2018, we need and deserve better.

 

The exorcists were baffled that nobody wanted them to do their best trying to rid patients of their demonic possession. They agreed it must be due to stigma against demonic possession.

 

Now this is a great talking point i want to see in an article referencing PACErs.

 

Not sure which thread is most appropriate for this, but the 'leading experts' letter was released: http://tillymoments.blogspot.co.uk/2018/05/bbc-should-check-their-information.html

Chalder, Crawley, McCrone, Sharpe & Wessely, claiming there is "good evidence from multiple studies and randomised controlled trials (RCTs) showing that these treatments are safe and useful for some patients". Wonder what specific studies they're referring to?

There are some problems with the letter of complaint that the BBC was responding to (eg the GMC did not fund PACE).

 

Investigative reporting at its best.

....evidence that these treatments are safe and useful for some patients.

I suspect that the average twelve year old could spot the potential follow up questions.

 

No surprises there then. Wonder if someone could put together a counter reply to send to the BBC?
@Jonathan Edwards @dave30th

 

The letter from the 'leading experts' implies that the CBT used for ME patients is the same as is used for cancer and MS this is not true. How can they still be getting away with this. As we all know one type is to help cope with a debilitating illness and the other is to get rid of 'false illness beliefs'.

Even if there are faults with the latter to the BBC I think it is really good. Really greatful they wrote it.