Petition: Opposing MEGA

[Countrygirl]

Not sure where this should be posted but this thread seems the most relevant given the author of the paper.
Chronic fatigue syndrome in young people: The spectrum and the myth

Bearing in mind that Prof EC maintains that severe ME does not exist, the abstract to this paper written by EC confuses me:

Large telephone surveys in both the UK and USA suggest that chronic fatigue syndrome/myalgic encephalopathy (CFS/ME) in children is both surprisingly common (0.19–2%), and indiscriminate in who it affects (Jordan et al, 2000; Chalder et al, 2003; Jones et al, 2004). There is no gender preference, no social class gradient, and all ethnic groups are affected. The CFS/ME described in studies where patients are recruited from specialist care is much rarer and predominantly affects white females of higher socioeconomic status (Patel et al, 2003

Is she saying that patients from the fatigue clinics have a different condition to the tired children she identifies from phone surveys? So, which type of CFS does she purport to 'treat'?

 

[charles shepherd]

Hi Jo.

Sadly I have not been able to form a relationship with Invest in M.E and the other UK charities I approached.

When I wrote 'fully inclusive' previously, I was thinking of Shepherd's "big tent" ...but much, much bigger. I will not be happy until I can attend an M.E conference that covers every single M.E charity, doctor, advocate, patient and researcher. I want to pig-out at an "all you can eat" buffet of science and thought but, the hurtful and harmful behaviour of the medical and M.E communities stands in my way.

The open wound between patients and medicine over M.E will have to be sutured at some point by someone. I wish them all the luck in the world. But right now, I wish for a Unified-UK-ME-Super-Conference.

Again, it can be done.

I am not aware of any approach that you have made to the MEA

If you have written to the MEA and not received a reply please let me know and I will follow this up

If it would help I would be very happy to speak to you on the phone (morning, noon or evening - any day of the week including weekend) at some convenient point during the coming week

If you would like to follow this up please get in touch via admin@meassociation.org.uk

 

[slysaint]

.

Thank you for your post @lilpink .. it gives yet another dimension to the problems inherent in MEGA.

The National Outcomes Database (NOD) has not received much attention from patients so far.

We should be scrutinizing Esther Crawley's NOD, its methods and objectives.

NOD casts a whole new light on Esther Crawley's involvement in MEGA (and on her status and power as Vice Chair of the CMRC)....
.

"Simon Collin now runs the CFS/ME National Outcomes Database, which collects assessment and outcome data from 26 adult and 4 paediatric teams across England. This is the largest CFS/ME disease register in the world, with assessment data on more than 7000 adults and 1500 children with CFS/ME. It provides the infrastructure for a variety of projects in children and adults. "

It gets even scarier:
"
Teaching
My priority for teaching over the last 7 years has been to provide training nationally for both clinicians and education professionals in the diagnosis, management and recent research findings in paediatric CFS/ME. I developed the department of health training package for the diagnosis and management of CFS/ME (2004) which I delivered to all CFS/ME services. I then developed basic and advanced workshops for health professionals as well as a separate package for teachers/tutors/attendance officers which I have delivered to >70 groups of clinicians/schools/commissioners (2008-11). I take teaching seriously and I am joint element lead for Child Health in the Community Orientated Medical Practice (COMP 1) unit of the clinical medical undergraduate degree (260 students)."

spreading her methodology still further

 

[Chrisb]

Is she saying that patients from the fatigue clinics have a different condition to the tired children she identifies from phone surveys? So, which type of CFS does she purport to 'treat'?

I don't know but this recent paper seems to shed further light on the question. I found this when googling NOD, to which it contains an interesting reference

.http://www.bristol.ac.uk/ccah/research/childdevelopmentdisability/chronic-fatigue/

 

[batteredoldbook]

I am not aware of any approach that you have made to the MEA

Charles, you and I have spoken via email and twice on the telephone. I spent an hour speaking to Neil, your chair, at his request. I have been in contact with your PR, Tony via social media and via email.
The MEA will always have a special place in my heart because it was there for me when I needed it at age 19. At 43, things are very different, and although I think we do not see eye to eye I would always be very happy to hear from any of you via email.

 

[charles shepherd]

Charles, you and I have spoken via email and twice on the telephone. I spent an hour speaking to Neil, your chair, at his request. I have been in contact with your PR, Tony via social media and via email.
The MEA will always have a special place in my heart because it was there for me when I needed it at age 19. At 43, things are very different, and although I think we do not see eye to eye I would always be very happy to hear from any of you via email.

OK

I think it's helpful for people on here to know (because the MEA does get a lot of sometimes very unfair criticism) that staff and trustees (especially our chairman Neil) all try very hard to communicate with our members when they are unhappy about something

But sometimes we just have to agree to disagree…….

 

[batteredoldbook]

OK

Charles,

I have expressed to you my grave concerns about the involvement of severely ill M.E patients in research while British medicine remains so enthralled by Biopsychosocial theory.

I have explained my own view that pace is neither flawed, nor as some would have it, fraud. I think it is something much more interesting.

I did this in the hope that medical and patient communities could avoid conflict.

The last time we spoke I expressed to you my feelings upon receiving abusive language from an editor at a British medical journal.

James/.
@batteredoldbook

 

[Jo Best]

Over 1600 signatures this morning - https://www.change.org/p/opposing-mega-a-vote-of-no-confidence-in-mega-research-for-me-cfs

 

[Cinders66]

Not sure where this should be posted but this thread seems the most relevant given the author of the paper.
Chronic fatigue syndrome in young people: The spectrum and the myth

Bearing in mind that Prof EC maintains that severe ME does not exist, the abstract to this paper written by EC confuses me:



Is she saying that patients from the fatigue clinics have a different condition to the tired children she identifies from phone surveys? So, which type of CFS does she purport to 'treat'?

Where does EC say that? She is doing a severe ME AFME funded study I thought that Esthers main fault was being a lumper of fatigue and calling it all ME and over emphasizing behavioural treatment for all under her umbrella eg kids tired for six weeks and cured by sleep hygiene advice get the same label and supposed treatment as a kid in wheelchair and the multi inflammatory /pain / autonomic symptoms we would recognize as ME.

 

[Barry53]

Charles,

I have explained my own view that pace is neither flawed, nor as some would have it, fraud.
...

The last time we spoke I expressed to you my feelings upon receiving abusive language from an editor at a British medical journal.

James/.
@batteredoldbook

How is it PACE is not flawed or fraud?

 

[Artstu]

How is it PACE is not flawed or fraud?

Glad someone asked, I find it hard to understand James posts, too cryptic for my basic brain.

 

[Countrygirl]

Excuse me gate crashing this thread, but I am more likely to gain peoples' attention here and it is closely related to the topic discussed here.

When writing our open letter to MEGA does ME warrant the term 'disease' or do we still have to refer to it as an 'illness'.

Thanks!

 

[JohnCB]

When I searched Wikipedia for illness I was taken to the entry for disease. Wikipedia seems to be treating it as a synonym.

Concepts
In many cases, terms such as disease, disorder, morbidity and illness are used interchangeably.[3] There are situations, however, when specific terms are considered preferable.
Disease
The term disease broadly refers to any condition that impairs the normal functioning of the body. For this reason, diseases are associated with dysfunctioning of the body's normal homeostatic processes.[4] The term disease has both a count sense (a disease, two diseases, many diseases) and a noncount sense (not much disease, less disease, a lot of disease). Commonly, the term is used to refer specifically to infectious diseases, which are clinically evident diseases that result from the presence of pathogenic microbial agents, including viruses, bacteria, fungi, protozoa, multicellular organisms, and aberrant proteins known as prions. An infection that does not and will not produce clinically evident impairment of normal functioning, such as the presence of the normal bacteria and yeasts in the gut, or of a passenger virus, is not considered a disease. By contrast, an infection that is asymptomatic during its incubation period, but expected to produce symptoms later, is usually considered a disease. Non-infectious diseases are all other diseases, including most forms of cancer[citation needed], heart disease, and genetic disease.

Illness
Illness is generally used as a synonym for disease.[5] However, this term is occasionally used to refer specifically to the patient's personal experience of his or her disease.[6][7] In this model, it is possible for a person to have a disease without being ill (to have an objectively definable, but asymptomatic, medical condition, such as a subclinical infection), and to be ill without being diseased (such as when a person perceives a normal experience as a medical condition, or medicalizes a non-disease situation in his or her life – for example, a person who feels unwell as a result of embarrassment, and who interprets those feelings as sickness rather than normal emotions). Symptoms of illness are often not directly the result of infection, but a collection of evolved responses—sickness behavior by the body—that helps clear infection. Such aspects of illness can include lethargy, depression, loss of appetite, sleepiness, hyperalgesia, and inability to concentrate.[8][9][10]

 

[CFS_for_19_years]

Excuse me gate crashing this thread, but I am more likely to gain peoples' attention here and it is closely related to the topic discussed here.

When writing our open letter to MEGA does ME warrant the term 'disease' or do we still have to refer to it as an 'illness'.

Thanks!

I think ME is best characterized as a disease, comparable to any other neurological disease such as Parkinson's, multiple sclerosis, etc. No one would call those diseases "an illness."

The word illness, in my mind, indicates something temporary, that if only enough time passes, it will also surely pass. The flu or cold are illnesses.

 

[AndyPR]

Excuse me gate crashing this thread, but I am more likely to gain peoples' attention here and it is closely related to the topic discussed here.

When writing our open letter to MEGA does ME warrant the term 'disease' or do we still have to refer to it as an 'illness'.

Thanks!

Just having had a quick look it looks like the NHS, NICE and MEGA themselves refer to it as a condition. Looking at Oxford English dictionary website it says this for disease

A disorder of structure or function in a human, animal, or plant, especially one that produces specific symptoms or that affects a specific location and is not simply a direct result of physical injury.

and this for illness

A disease or period of sickness affecting the body or mind.

So I think the answer is yes

 

[Countrygirl]

I am just checking through the letter and we have quoted Prof Hooper and he refers to it as a 'disease'.

I read somewhere a few months ago that it does now qualify to be referred to as such, but wanted to check...........back to the letter.

 

[batteredoldbook]

I will try to address the question "How is it PACE is not flawed or fraud?" because the answer is, I think, critical to the future of medical and M.E communities. However, I will do so with the expectation of both courtesy and fair treatment in return. I will not be held to standards of behaviour that the medical and M.E communities do not apply to themselves.
Firstly however, I have to go shepherd a gaggle of young Gryffindor in their quest to rid the local area of dark magic (and sweets).

 

[Yogi]

I am just checking through the letter and we have quoted Prof Hooper and he refers to it as a 'disease'.

I read somewhere a few months ago that it does now qualify to be referred to as such, but wanted to check...........back to the letter.

This is important in my opinion.

Definitely refer to it as disease. Wessely and White have long gone on about how it is not a disease and it is a syndrome or illness. Therefore if Wessely/White say it is not a disease it must be.

ME definitely is a disease and that is why the psychs came up with CFS (Syndrome) so they could claim it is not.

Many researchers are referring it to as a disease. IOM stated the name should be Systemic Exertion Intolerance Disease.

 

[trishrhymes]

I will try to address the question "How is it PACE is not flawed or fraud?" because the answer is, I think, critical to the future of medical and M.E communities. However, I will do so with the expectation of both courtesy and fair treatment in return. I will not be held to standards of behaviour that the medical and M.E communities do not apply to themselves.
Firstly however, I have to go shepherd a gaggle of young Gryffindor in their quest to rid the local area of dark magic (and sweets).

Might be worth starting a new thread for this, or writing it as a blog, to keep the ensuing discussion all in one place.

 

[Countrygirl]

Still checking the letter.......it is very looooog, but can't find anything to erase as yet.
There is something I consider of concern. Can you scroll up a few posts and read the post I made regarding EC's statement that the people who attend the clinic have a much rarer form of ME/CFS than those who attend her clinics, please? Her statement makes me uncomfortable. I feel this is significant. What do you think?.....back to the letter........footnotes coming up soon....................ugh! I always find that tedious.