Here's my draft letter. Comments please. I'll send it in a day or 3 before I forget.
Dear Dr Peter Fisher,
Thank you for informing me that you have changed the age range on your survey. I have now filled it in.
I must say I was puzzled and disappointed by the questions asked, and wonder what on earth you could expect to learn about the realities of emotional distress in ME/CFS in particular from this very limited range of questions. It seemed to be a generic set of questions aimed at finding ways to tweak CBT or other therapies for people suffering from anxiety disorders. So why run it for people with ME/CFS? It did not begin to address the causes of emotional distress in people with ME/CFS or how they could be remedied.
I have two specific areas of concern:
1.
The Chalder Fatigue Questionnaire is generally regarded among researchers who understand ME/CFS to be a very poor diagnostic tool to determine whether a person has ME/CFS or some other fatiguing condition such as depression or idiopathic fatigue. And it does not adequately differentiate levels of ME/CFS severity. Most of the descriptors are not ME/CFS specific, and there is a strong ceiling effect such that someone with mild ME/CFS can easily get the same score as someone completely disabled by it.
If you are using CFQ as either a diagnostic or as a measure of severity of ME/CFS symptoms, your results will be unreliable.
Reference:
S4ME: Submission to the public review on common data elements for ME/CFS: Problems with the Chalder Fatigue Questionnaire
2. The whole survey seems to be built on the premise that emotional distress in ME/CFS is caused by patterns and control of thoughts and can be remedied by therapy. That is so very far from the truth.
As someone who has had ME for 30 years, is carer for my daughter with ME for 22 years, and who has spent a high proportion of my time every day for the last 4 years in on-line communication with a wide variety of people with ME from all around the world, I can tell you that the emotional distress suffered by people with ME has clear causes that cannot be addressed by therapy aimed at changing thought patterns.
Here is a list of the causes of emotional distress that recur repeatedly in on-line discussions:
Major life changes:
a) loss of career
b) loss of, or problems with, close relationships
c) loss of opportunity to have a family or achieve other hopes
d) loss of social life
Unmet needs:
e) financial worries and hardship
f) difficulties accessing suitable housing
g) difficulties accessing suitable and sufficient care, loss of ability to self care
h) difficulties accessing medical care
Treatment by others:
i) gaslighting by the medical and psychiatric/psychological professions
j) not being believed by friends, family, doctors etc, being treated as malingerers, or as suffering from psychosomatic symptoms.
k) prolonged battles with benefits agencies whose employees don't believe ME is real and class people with ME as malingerers.
Reference:
ME/CFS and the Biopsychosocial Model: A Review of Patient Harm and Distress in the Medical Encounter, Geraghty and Blease
Lack of appropriate medical treatment:
l) inappropriate exercise based therapy - Graded Exercise Therapy or Activity Management, that worsens symptoms long term for the majority of patients.
m) Directive CBT that assumes ME symptoms are a result of anxiety leading to fear of exercise, and encourages increasing activity. This leads to a combination of worsened physical symptoms due to increased activity, and therapy-induced self blame for not getting better.
n) lack of any medical effective treatment
References:
ME services in the UK not fit for purpose - Report on large patient survey.
Dialogues for a Neglected Illness - 2 ten minute videos on Graded Exercise Therapy.
Symptoms
o) the daily distress of coping with symptoms that are both debilitating, limiting activity, and ranging from unpleasant to unbearable (pain, nausea, brain fog, sensory sensitivities etc)
p) post exertional malaise and the knowledge that a small step beyond one's current energy envelope can lead to crashing down into far worse symptoms that may last weeks or longer.
Reference: Film
Voices from the Shadows
Government neglect
q) lack of biomedical research and research funding, and continuing waste of research funding on discredited psychological therapies.
r) loss of hope, concern for the future.
Reference:
UK Parliament - Backbench Debate on ME - 24th January 2019
Transcript
.............
No therapy, however carefully geared to the results of a survey like yours, is going to touch any of these major causes of distress. It will just leave patients at the end feeling yet another layer of self blame for not being able to think away all these ongoing factors.
The astonishing thing, to me, is that despite all these losses, barriers to proper care, gaslighting, and distressing symptoms, the people with ME I come across are so resilient, sane, well balanced, and determined to make the best of their very limited lives.
.........................
A simple question for you. Why this study? What is the point? Would you run the same survey with people with other long term disabling and debilitating physical diseases, like Multiple Sclerosis, or Parkinsons Disease?
Reading back over this, I can see that it may seem like a hostile response to a genuine attempt on your part to improve services to people with ME. While I may applaud the intention, it is disheartening for people with ME to see so little understanding of our illness and the reality of our lives from the very people who are trying to help us.
To be presented with a survey that says it's about ME (or CFS) that shows such a lack of understanding of the physical and cognitive effects and social consquences of this very debilitatiing physical illness which studies have shown to be one of the most disabling illnesses, is disheartening.
To then find the rest of the survey focused entirely on thoughts and how we control them, is demeaning to people faced every day with external factors including real hardship, medical discrimination and ridicule.
I hope you will take this letter in the spirit in which it is intended. I would be very pleased to discuss it further with you and provide you with research evidence to back up my statements.
Yours etc.
