Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
Discuss the article on the Forums.

My doctor won't diagnose me with CFS

Discussion in 'General ME/CFS Discussion' started by BRISWHARF, Jul 21, 2017.




    I would really love to hear some of your opinions on my situation and I hope you can help please. I've had all the standard test done with my GP and they all came back clear so I was referred to my local Chronic Fatigue clinic. I had an appointment with them and they wrote to me and my GP afterwards to say they won't diagnose me with CFS as my symptoms don't match the kind of person they normally diagnose. My GP won't refer me to any other specialist.

    My symptoms are chronic fatigue (bedbound), ringing in ears, hair falling out, acne, sensitivity to sound & light & dizzy. I've been like this for 2 years now & can no longer work (i'm in my 30's). It started so suddenly that I can pinpoint the day it begun & I was well before this.

    I have NEVER had body pain, colds, sore throats or flu like symptoms. Not once. I think this might be the reason why the CFS clinic won't diagnose me with CFS however I'm slightly confused about this as I didn't think you HAD to have these symptoms?

    I would be really interested to hear an opinions on this. Do I just accept that I live ill without a diagnosis? Does it really matter if i don't get a diagnosis if there is no easy fix for CFS anyway?
    merylg, Hutan, belize44 and 2 others like this.
  2. Valentijn

    Valentijn Senior Member

    No, a diagnosis is necessary, but should be done in such a manner as to ensure it's accurate. Your doctor may need to run more tests to rule things out.

    It might be a lot harder to get assistance without any diagnosis.

    But at any rate, the flu-like symptoms are not a mandatory part of diagnostic criteria, and their lack shouldn't exclude a diagnosis. Post-exertional malaise (PEM) is a core symptom however, and would likely indicate ME/CFS if other disease featuring exercise intolerance have been excluded. PEM involves the onset or exacerbation of symptoms starting approximately 24 hours after exceeding your activity limitations.

    The clinic needs to clarify which symptoms they think you are lacking for a diagnosis, or which symptoms they think you shouldn't be having to look like an ME patient.
  3. Mij

    Mij Senior Member

    I don't understand why your GP won't refer you to a specialist to investigate further. It sounds very dismissive to me. If you are unable to work on account of your health then you should insist on further investigation.
    merylg, Snow Leopard, Hutan and 4 others like this.
  4. pamojja

    pamojja Senior Member

    Maybe due to English being my second language I understand this wrong. But for me PEM starts right with exceeding my activity limitations, and last at least 24 hours even staying at complete rest. If rest isn't possible, then until it is.
    IreneF and ScottTriGuy like this.
  5. Barry53

    Barry53 Senior Member

    Have you considered changing GP?


    Thank you for your replies. Much appreciated.

    I have changed GP practices. I have also seen different GP's within the practises. None of them do anything.

    If i knew what kind of specialist I wanted to be referred to I could press for that....but I don't know what to ask for? A neurologist doesn't deal with my kind of symptoms ( i think) and I have already had heart tests so no point asking for a cardiologist. Any other suggestions on specialists I could see please?
    Webdog likes this.
  7. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

    Toronto, Canada
    I am the same way - I have immediate onset PEM, though sometimes it may be delayed by 15 minutes or so if I am only briefly (a few seconds) over my exertion threshold and the symptoms may last only a few hours - if I spend more than 30 seconds with too much exertion, the PEM is immediate and lasts for days.

    @BRISWHARF Perhaps a functional medicine doctor?
    Silence and NelliePledge like this.
  8. ukxmrv

    ukxmrv Senior Member

    It's not a satisfactory situation because it leaves you unable to work and without any idea of what is wrong with you. If you need to apply for a benefit then someone will have to write a report or sign you off.

    Usually I advise people not to rush into a CFS diagnosis or to wish for one. Too often it's shown to be a mis-diagnosis or a convenient place to dump people who are too hard or difficult and at worse, considered a psych patient. Your GP(s) though seems to want to keep you in a holding pattern with no further investigations.

    Have you considered going to see a doctor who specialises in CFS that other patients recommend? From your name can I guess you are in Brisbane? The only doctors I know of there are Dr Gary Deed and Dr Whiting (if he is still working)
  9. charles shepherd

    charles shepherd Senior Member

    Some basic information from the MEA on the importance of Early and Accurate Diagnosis of ME/CFS

    Dr Charles Shepherd
    Hon Medical Adviser, MEA

    The importance of early and accurate diagnosis - helpful hints for healthcare professionals that could improve prognosis
    This leaflet is also available as a FREE download HERE.


    ME/CFS is a complex multisystem disease that has a population prevalence of at least 0.2% to 0.4% (ie it affects up to 2 to 4 per 1,000 of the population and up to 250,000 people in the UK).

    Many people in the UK experience a long delay in obtaining a diagnosis. A 2016 MEA website survey found that only 18% were diagnosed within six months of onset of symptoms; 62% waited a year or more.

    Chronic fatigue is common and some people are being misdiagnosed with ME/CFS when they have another,sometimes perfectly treatable, explanation.


    * To lessen the chance of ME/CFS taking a more prolonged and severe course.
    * To exclude other conditions that present with similar symptoms.
    * To prevent harmful approaches to management such as ‘working through fatigue’ and inappropriate exercise programmes
    * To organise a comprehensive management plan involving activity management; symptom relief; information and support relating to education, employment and sickness benefits.


    The commonest age of onset is in the early 20s to mid 40s.

    The illness is often triggered by an acute infection, followed by a ‘failure to recover’ and development of characteristic ME/CFS symptoms.
    Other immune system stressors – eg vaccinations – occasionally trigger ME/CFS.

    Gradual onset in a minority with no clear precipitating event.

    Allow adequate time for taking a detailed history – medical, drug (plus alternative and recreational drugs), social, family and overseas travel – and performing a full clinical examination.

    A doctor should also ask about impact on education or employment.

    Where symptoms are atypical, or more pronounced than normal in ME/CFS, a more thorough clinical assessment is essential.

    Assess psychological well-being and mental health.


    There is no agreed diagnostic criteria for ME/CFS. Diagnosis is based on a cluster of characteristic symptoms along with exclusion of other possible explanations.

    * Activity-induced muscle fatigue.
    * Post-exertional malaise/symptom exacerbation whereby symptoms are amplified by physical and/or mental exertion with a delayed impact – later the same day, the next day, or even later. The amount of activity that provokes symptom exacerbation can be very minimal.
    * Cognitive dysfunction involving short-term working memory, concentration and attention span, information processing, and word- finding ability
    * Pain can affect muscles (myalgia), joints (arthralgia) and nerves (neuropathic) but is not always present. Pain is often difficult to alleviate with simple analgesics and may be accompanied by sensory disturbances/paraesthesiae.
    * Unrefreshing sleep pattern may include hypersomnia in the early post-infection stage, fragmented sleep and restless legs syndrome later on. In more severe cases, there may be a reversal of normal sleep rhythmn (ie being awake at night but sleeping during the day.
    * Autonomic nervous system dysfunction involving orthostatic intolerance, orthostatic hypotension – resulting in dizziness or feeling faint – and in some cases postural orthostatic tachycardia syndrome.
    * Poor temperature control including increased sensitivity to hot and cold, sweating, feeling feverish.
    * On-going flu like symptoms including sore throats and tender glands.
    * Intolerance to alcohol and medications – especially psychotropic (antidepressant) drugs.
    * Headaches of a new type or severity that may have a migrainous quality.
    * Sensory disturbances including paraesthesiae (‘pins and needles’) and increased sensitivity to noise and bright light.
    * Digestive disturbances consistent with irritable bowel syndrome (ie abdominal pain, bloating, change in bowel habit) may develop following the onset of ME/CFS and be exacerbated by certain foods (e.g wheat or dairy products).
    * Severely affected patients may have substantial neurological impairments, including atypical seizures (fits), unwanted muscle activity, and swallowing difficulties that may require nasogastric (tube) feeding.

    Symptoms fluctuate in severity, throughout the day, day to day, week to week. The pattern may change over time.

    There is a substantial and sustained reduction in both physical and mental activity. This has a major effect on all aspects of daily living.

    Exacerbations and relapses are caused by infections, trauma and other stressors, including menstrual exacerbation.


    In addition to a full clinical examination:

    * Check for anaemia, thyroid and liver disease, lymphadenopathy.
    * Where there are orthostatic symptoms, check pulse and blood pressure lying and standing.
    * Hypermobility syndromes should be checked for in younger patients.
    * In children, check and monitor height and weight.


    There is no diagnostic blood test for ME/CFS.

    Baseline investigations are essential in order to exclude common conditions that can cause chronic fatigue:

    * Full blood count and differential
    * Serum ferritin
    * ESR and C-reactive protein
    * Metabolic screen for calcium, phosphorous, urea and electrolytes, total protein, albumin and globulin,blood sugar
    * Coeliac disease screening test – IgA anti-tissue transglutaminase
    * Creatine kinase
    * Serum creatinine
    * Liver function tests
    * Thyroid function tests
    * Urinalysis for protein, blood and glucose

    Results should be within normal limits. Where abnormalities occur, consideration must be given to other diagnostic explanations.



    * Atypical symptoms (e.g joint pain accompanied by swelling)
    * Red flag symptoms or signs (e.g weight loss, significant lymphadenopathy, fever)
    * Symptoms not normally associated with ME/CFS (e.g breathlessness, chest pain)
    * History or examination suggesting other diagnostic explanations or co-existent problems


    * Autoantibody screen – where a rheumatological or autoimmune condition is possible
    * Screening for infectious diseases – hepatitis B/C, HIV, Lyme disease, Q fever, toxoplasmosis
    * Synacthen test – where Addison’s disease is a possibility
    * Serum hydroxyvitamin D – in housebound patients
    * Tilt-table testing where there is significant autonomic system dysfunction
    * Polysomnography where sleep disturbance suggests a primary sleep disorder such as sleep apnoea.


    Most ME/CFS research criteria stipulate that a diagnosis should only be made after six months of symptoms. In clinical practice this should normally be regarded as the endpoint of the diagnostic process.

    A working or interim diagnosis is better than none and allows active management to begin.

    The diagnosis often needs to be pieced together through a series of consultations.

    At six weeks: A working diagnosis of post-viral fatigue syndrome can be made where appropriate. Where a child has missed around four weeks of school, action must be taken to speed up the diagnostic process.

    At three months: A provisional diagnosis of ME/CFS can be made if symptoms persist and no other explanation is found. Diagnosis should normally have been confirmed in children and adolescents.

    By four months: The provisional diagnosis should have normally been confirmed in adults. A management plan should now be in place.

    Where there is continuing uncertainty about the diagnosis, or symptoms are severe, patients should be referred to a hospital-based ME/CFS referral service.


    * ME/CFS has been reported in children as young as five. There appears to be a peak onset of symptoms around 13 to 15.

    * ME/CFS can be misdiagnosed as a behaviour problem or school phobia.

    * Children often present differently to adults. Symptoms that are more common or prominent include stomach pain, nausea, headache and loss of appetite.

    * ME/CFS is reported to be the commonest cause of long-term sickness absence from school.

    * Children should be known to community paediatric services and under consultant care if away from school.


    Where there is continuing uncertainty about the diagnosis, or symptoms are severe, patients should be referred to a hospital-based ME/CFS referral service.

    If there is not a suitable ME/CFS referral service nearby, the Countess of Mar has established through a House of Lords parliamentary question that people can be referred elsewhere to an NHS service/consultant of their choice:

    The MEA website has details of all the multidisciplinary hospital-based referral services for adults and children:

    The MEA has an information leaflet covering Specialist Referrals in more detail.


    * The 2017 MEA purple book: ME/CFS/PVFS: An Exploration of the Key Clinical Issues summarises and references key information on research, clinical assessment and management.
    We have funds in our education budget to send free copies to GPs if requested to do so.

    * The MEA has information leaflets covering all aspects of management: symptoms, benefits, employment, etc.

    * The Chief Medical Officer’s Report on ME/CFS, NICE guideline on ME/CFS, Canadian diagnostic criteria, and Institute of Medicine Report can be downloaded from the MEA website document archive (see About The MEA > Policies and Documents).
    GreyOwl, Hutan, Webdog and 3 others like this.


    Thank you for your replies!

    I actually live in Bristol in the UK!

    I have been to see private doctors. I've been to the Breakspear & also a local functional medicine doctor. I had tests done for viruses & Lymes etc. They were all clear. Their only advice really was a supplement regime which I've been doing but it's made no difference. They didn't diagnose me with anything. They obviously agree I have servere fatigue but I don't think they give out diagnosis of CFS. Well they didn't with me anyway.

    Does CFS normally just start suddenly and severely? Like you know which day it started on (like I do)? Or is it usually more a gradual thing?

    Thanks ☺☺
    ukxmrv likes this.
  11. charles shepherd

    charles shepherd Senior Member

    Most (but not all) people with ME/CFS can date the onset of their ME/CFS symptoms to an acute infective episode (or sometimes another immune system stressor such as a vaccination) - after which they have never been well

    But there is a small but significant minority of patients who have a more gradual onset, sometimes with repeated infective episodes, where there is no clear date of onset and a more gradual deterioration of health, sometimes with periods of remission or even a return to relatively normal health

    Hutan and ScottTriGuy like this.
  12. Valentijn

    Valentijn Senior Member

    There are other forms exercise intolerance which can start during or shortly after exertion, and ME patients can have those too. The most common is probably due to orthostatic intolerance. But a major distinction of PEM is that it is delayed, and tends to involve neurological and immune symptoms, in addition to the muscular and circulatory symptoms that seem more common in other types of exercise intolerance as well.
    Mij, aaron_c and ScottTriGuy like this.


    How about asking my GP to refer me to an immunologist? Or would that not be a good person to see? I've already seen an endocrinologist.
    merylg likes this.
  14. Hip

    Hip Senior Member

    @BRISWHARF, an important consideration with ME/CFS diagnosis is not to prematurely apply an ME/CFS label to a patient until you rule out the diseases which have very similar symptoms to ME/CFS.

    Some of the diseases which have very similar symptoms to ME/CFS are quite treatable, so it can be tragedy for the patient if they are incorrectly diagnosed with ME/CFS (which is not very treatable), when in fact they have another disease which is treatable.

    In your case, the hair loss and acne might suggest celiac disease, an autoimmune disease with similar symptoms to ME/CFS. Has your doctor considered this? Celiac disease is caused by an immune reaction to gluten, and the treatment is simply to avoid gluten.

    And your shortness of breath symptom that your mention on another thread might suggest anemia, another condition that can mimic ME/CFS symptoms. Anemia can also cause hair loss.

    Hypothyroidism is another ME/CFS mimic, and can cause hair loss. This is easily treatable with thyroid hormone tablets.

    Then there is systemic lupus erythematosus, which can cause hair loss, acne, and can mimic ME/CFS.

    Has your doctor tested you for all the above?

    These are some of the more common diseases that can have similar symptoms to ME/CFS. For a more comprehensive lists of diseases that mimic ME/CFS, see these links:

    Chronic Fatigue Syndrome: Evaluation and Treatment - American Family Physician (see table 2)

    Diseases similar to CFS/ME

    From the ME/CFS perspective, have you looked at the standard set of criteria that doctors use to diagnose ME/CFS, to see if your symptoms match those criteria?

    There is the CDC definition of ME/CFS (this is very similar to the NHS criteria for ME/CFS), and also the more strict and exacting CCC definition of ME/CFS (see page 2).

    It is quite easy to satisfy the CDC criteria, but ideally you would want to satisfy the CCC criteria as well, because then there is more certainty that you have ME/CFS.

    The CCC criteria include orthostatic intolerance conditions, which are typically postural orthostatic tachycardia syndrome (POTS), neurally mediated hypotension (NMH) and delayed postural hypotension (aka orthostatic hypotension). If you have POTS, NMH or orthostatic hypotension, this adds to the evidence that you may have ME/CFS. These conditions can cause dizziness.

    You can test whether you have POTS, NMH or orthostatic hypotension at home in 10 minutes, using the instructions detailed in the POTS section in this roadmap of chronic fatigue syndrome treatment.
    Last edited: Jan 9, 2018
    slysaint, Hutan and MeSci like this.
  15. pamojja

    pamojja Senior Member

    Hmm, interesting interpretation, and the first time I heard about this. For example the Canadian Consensus defines PEM without even mentioning delay. Except for the slow recovery period, and as I originally understood it:

  16. Snow Leopard

    Snow Leopard Hibernating

    South Australia
  17. lnester7

    lnester7 Seven

    Mine was very gradual, I didn't get flu symptoms till year 5+. I knew I had cfs becuase activity made me worst. But the only symptom I had was sleep issues and fatigue to begin with and random stuff.
  18. Forbin

    Forbin Senior Member

    Perhaps oddly, I date my sudden, dramatic onset to 24 days after the start of an acute ineffective episode, at a point where I felt all but recovered (though perhaps still just a bit tired). If not for a blood test that showed that I was still on the tail end of an infection, my doctor might not have connected the two.
  19. IreneF

    IreneF Senior Member

    San Francisco
    Hair loss and acne could be indicative of hormonal problems, but symptoms don't usually include fatigue. Perhaps you could see an endocrinologist
  20. wastwater

    wastwater Senior Member

    I'm was never diagnosed with ME but in my case it worked out well because I had something else I needed to find first
    Maybe not being diagnosed with ME is the new ME because you won't be subject to the cure of CBT and GET
    I'm not sure the diagnosis has much value in the UK and the next question most people would ask is what is ME and how does that work and nobody knows yet

See more popular forum discussions.

Share This Page