C'mon how could our concerns be legitimate ?
It's obviously a misunderstanding, one that's easily cleared up by an obnoxious and condecending reply.
Aww, ok then, I won't worry my pretty little head about it
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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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C'mon how could our concerns be legitimate ?
It's obviously a misunderstanding, one that's easily cleared up by an obnoxious and condecending reply.
Esther Crawley has only ever seen mild and pervasive refusal syndrome.Just a thought, how many UK doctors, let alone researchers,
have even seen a patient with severe ME? Nigel Speight is one I can think of, poor chap.
.MEGA Q&A said:This means patients with other causes of fatigue will not be recruited including (for example): those with thyroid disease, diabetes or depression that is sufficiently severe to explain their fatigue
.MEGA Q&A said:What data will you collect?
We will collect symptom data on all patients to allow us to identify which patients will be identified as having CFS/ME using different diagnoses. We will also include data on fatigue, disability, anxiety and depression.
Got to shoe horn the BPSers and their beliefs in somehow.Anxiety ? Depression?
So I've just really appreciated that, taking this update at face value, I wouldn't qualify for inclusion in the study, on the basis that I last attended a clinic 10 years ago. In that time I have gone from mild to moderate and am no longer working but "no clinic, no inclusion". And they'd still like me to sign the petition to support this....
I would like to register the following concerns about the proposed M.E./CFS Epidemiology and Genomics Alliance (MEGA) research study:
1. That a draft trial protocol should be published and a formal consultation subsequently undertaken, with patients, advocates and other interested parties, before any application for funding is made to the Medical Research
Council.
2. That any researcher who has previously been involved in the now discredited PACE trial (or who has supported the bio-psychosocial model of M.E /cfs) should not be involved in any way in the study.
3. That the illness definition which is used to recruit patients onto the trial shall be the Canadian Consensus criteria (or a derivative thereof), which includes Post-exertional malaise (worsening of symptoms) as a mandatory
requirement for inclusion.
4. That the researchers involved in the study shall fully commit to the principles of data sharing with regards to any published work and complete transparency with regards to the conduct of the trial. There should be no attempt to use the excuse of a lack of patient consent to somehow keep data hidden - as was the case in the PACE trial.
5. That the trial will be conducted in accordance with the final (published) version of the trial protocol, with no post-hoc changes or subsequent deviations.
6. That a representative proportion of severely ill patients should be included in the study.
7. That a properly meaningful patient engagement group should be set up, membership of which is not confined to members of charities who are already part of the CMRC.
I'm not sure your point 5 about trial protocol makes sense for this kind of study, since it is an exploratory data search, not a trial of any treatment, so outcome measures will be genetic, metabolic etc data, not responses to treatment. I understand why you have included this point after the PACE fiasco, and I made the same mistake at first until someone put me straight!
I just want to chime in with my experiences of receiving calls from people who have been given a diagnosis of 'CFS' from the fatigue clinics. Several years ago the people who phoned for information and support usually gave a clear medical history of ME. Their accounts were typical of Ramsey, ICC or CCC ME.
However, in recent years, few of the people I speak to resemble ME patients and clearly, in my opinion, do not have ME, but some other condition that I don't recognise. They tell me they definitely have ME as 'the psychiatrist' told them so. In my opinion, they are being misled.
I rang the local CFS clinic which is run from the local old Victorian lunatic asylum and they assured me that CFS is a mental health condition and not a physical illness. A doctor told me a few weeks ago that CFS or ME is just a label 'we give to people with mental health problems and that it doesn't exist as a physical illness'. It is from this group of patients diagnosed by doctors with this misunderstanding of the illness from which the MEGA study will select their subjects . How can we possibly have confidence in their selection criteria? Obviously we can't. It is a complete mess.
I don't believe that this account of your local ME/CFS service (are you able to say where it is?) is typical of the overall picture of the ME/CFS clinics/services
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