Phoenix Rising tells QMUL: release the PACE trial data
Mark Berry, Acting CEO of Phoenix Rising, presents the Board of Directors’ open letter to Queen Mary University of London (QMUL) urging them to release the PACE trial data, and hopes that other non-UK organisations will join British charities in the same request...
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What does your ME/CFS Look like Poll: Please describe your symptoms and Cluster

Discussion in 'General ME/CFS Discussion' started by Justin30, Jun 6, 2016.

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What does your ME/CFS Look like Poll: Please describe your symptoms and Cluster

  1. Viral Onset Defined - Fatigue (f), Sleep Dysfunction (S), Pain (p), Brain Fog (BF), PEM

    1 vote(s)
    2.9%
  2. Viral Onset Defined - F, S, P, BF, PEM, Dyautonomia NMH or POTS (OI)

    1 vote(s)
    2.9%
  3. Viral Onset Defined - F, S, P, BF, PEM, OI, Neuro Symptoms (N)

    3 vote(s)
    8.8%
  4. Viral Onset Defined - F, S, P, BF, PEM, OI, N, Gastro Intestinal (GI)

    15 vote(s)
    44.1%
  5. Viral Onset Mixed Cluster - Explain - Example F, S, PEM, GI

    3 vote(s)
    8.8%
  6. Bacterial or Parasite Onset- Fatigue (f), Sleep Dysfunction (S), Pain (p), Brain Fog (BF), PEM

    0 vote(s)
    0.0%
  7. Bacterial or Parasite Onset - F, S, P, BF, PEM, Dyautonomia NMH or POTS (OI)

    2 vote(s)
    5.9%
  8. Bacterial or Parasite Onset- F, S, P, BF, PEM, OI, Neuro Symptoms (N)

    0 vote(s)
    0.0%
  9. Bacterial or Parasite Onset - F, S, P, BF, PEM, OI, N, Gastro Intestinal (GI)

    2 vote(s)
    5.9%
  10. Bacterial or Parasite Onset - Explain - Example F, S, PEM, GI

    2 vote(s)
    5.9%
  11. Flu and vertigo Not Defined- Fatigue (f), Sleep Dysfunction (S), Pain (p), Brain Fog (BF), PEM

    0 vote(s)
    0.0%
  12. Flu and vertigo Not Defined- F, S, P, BF, PEM, Dyautonomia NMH or POTS (OI)

    1 vote(s)
    2.9%
  13. Flu and vertigo Not Defined- F, S, P, BF, PEM, OI, Neuro Symptoms (N)

    0 vote(s)
    0.0%
  14. Flu and vertigo Not Defined - F, S, P, BF, PEM, OI, N, Gastro Intestinal (GI)

    0 vote(s)
    0.0%
  15. Flu and vertigo Not Defined - Explain - Example F, S, PEM, GI

    2 vote(s)
    5.9%
  16. Vaccine or Medicine Onset- Fatigue (f), Sleep Dysfunction (S), Pain (p), Brain Fog (BF), PEM

    0 vote(s)
    0.0%
  17. Vaccine or Medicine Onset- F, S, P, BF, PEM, Dyautonomia NMH or POTS (OI)

    1 vote(s)
    2.9%
  18. Vaccine or Medicine Onset- F, S, P, BF, PEM, OI, Neuro Symptoms (N)

    1 vote(s)
    2.9%
  19. Vaccine or Medicine Onset - F, S, P, BF, PEM, OI, N, Gastro Intestinal (GI)

    0 vote(s)
    0.0%
  20. Vaccine or Medicine Onset - F, S, P, BF, PEM, OI, N, Gastro Intestinal (GI)

    0 vote(s)
    0.0%
  1. Justin30

    Justin30 Senior Member

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    I am asking a lot from the community with regard to this but it may help down the line as disease tend to have a certain cluster of Symptoms that has not ever been defined or subsetted and academic articles seem to be all over the place. I am asking for clear responses not full stories etc. I am trying to get a clear picture as to what if any subtypes can be drawn out by symptoms. Be as thorough as possible.

    NOTE: This isnt for a project, submission to a journal or anything like that, I am solely trying to see if we through symptoms subset ourselves. I will give my example.

    Note: Recovered or people in remission describe your predominant symptom cluster. As per below:

    1. I have set up a Pole. Please pick a one. If its not on their use the abreviations I have.

    Defined = trigger that tested as EBV, MONO, Coxackies, Strep throat, C Diff, etc

    Undefined = trigger that happened but no test was done to determine or the tests were inconclusive. Or it was just a regular flu and your life changed.

    ****I ran out of choices bit "Gradual Onset no known trigger" Should be added****

    I will give an example and a template.

    2. Name your symptom (We are experts and no what most of our issues are called in medical terms here is the complete list (please copy and paste). *NOTE* rare symptoms leave out focus on the "MEAT" example Neuro, brain fog....the reason I say this is becaue sometimes some things are not symptoms.

    Please put the amount of symptoms at the end "# of Symptoms"

    Fatigue: worsened by physical exertion or stress, Activity level decreased to less than 50% of pre-illness activity level

    Sleep: Hypersomnia (excessive sleeping)Sleep disturbance, unrefreshing or non-restorative sleep, Sleep disturbance, difficulty falling asleep, Sleep disturbance, difficulty staying asleep (frequent awakenings)Sleep disturbance, vivid or disturbing dreams or nightmares, Altered sleep/wake schedule (alertness/energy best late at night)

    Brain fog/Cognotive: bad short term memory, poor concentration, blank stares, brain blank, confusion, loss of words, etc.

    Immune:Recurrent flu-like illness, Sore throat, HoarsenessTender or swollen lymph nodes (glands), especially in neck & underarms, night sweats, Fever, cough, allergy symptoms, Sensitivities to medications (unable to tolerate a “normal” dosage)Sensitivities to odors (e.g., cleaning products, exhaust fumes, colognes,hair sprays)Sensitivities to foods,Alcohol intoleranceAlteration of taste, smell, and/or hearing, MCAS

    Dyautonomia:Shortness of breath with little or no exertion, increase BPM 30 + upon standing, Can only stand for short periods of time, Cant stand, NMH, heart paplpatations, Chest pain burning, stabbing, dull, dry eyes and mouth, increased thirst, frequent urination, gastric emptying IBS C or D

    Neuro - Tremor or trembling, Twitching, Dysphagia, numb throat, Myclonus, Paralysis, blurred vision, visual disturbances of any type, headaches, neuropathic pain, numbness, tingling, burning, Brain Fog, SFN diagnosed, cold hands and feet, muscle weakness, weakness of limbs, Lightheadedness, feeling”spaced out”Inability to think clearly (“brain fog”)Seizures, Seizure-like episodes, Syncope (fainting) or blackouts, Sensation that you might faint, Vertigo or dizziness, Numbness or tingling sensationsTinnitus (ringing in one or both ears)Photophobia (sensitivity to light)Noise Intolerance

    Pain: Headache, Tender points or trigger points, Muscle pain, Muscle pain, joint pain, internal organ pain, back pain, eye pain

    Edocorine: Frequent urination, Painful urination or bladder pain, Prostate pain, Impotence, Worsening of premenstrual syndrome, (PMS)Decreased libido (sex drive), Severe weightloss or gain, hot and cold sweats

    Gastrointestinal Stomach ache; abdominal cramps, Nausea, Vomiting, Esophageal reflux (heartburn)Frequent diarrhea IBS-D, Frequent constipation IBS-C, Bloating, intestinal gas, Decreased appetite, Increased appetite, Food cravings, Weight gain, Weight loss

    3.
    Define level of severity 1 to 10

    1 lowest QOL Bedbound

    10 Recovered I love life

    *Have you recovered or worsened or Relapsed and Remitted*

    4. Give a brief explanation of your illness.

    Ex. Neurological predominantly leading to lots of Immune and GI Issues.

    Viral flu like illness definately immune related

    5. Define Criterias Met Fukuda, CCC and ICC only please.

    Try to keep it short and direct.

    I know I am asking a lot and likely this has been asked before but getting feedback may help researchers define some subsets in the future.

    I understand of you do not want to participate.

    I thank all in advance.

    Justin





     
    Last edited: Jun 6, 2016
    Jennifer J likes this.
  2. Justin30

    Justin30 Senior Member

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    ***Please use this Template if possible***

    1. Flu and vertigo Not Defined - F, S, P, BF, PEM, OI, N, Gastro Intestinal (GI)

    2. FATIGUE

    SLEEP

    BRAIN FOG

    IMMUNE

    DYSAUTONOMIA

    NEURO

    PAIN

    EDOCRINE

    GASTRO

    # of Symptoms

    3. Illness severity 1-10, 1 worst 10 best

    4. Brief Explanation

    5. Fukuda, CCC, ICC
     
    Last edited: Jun 6, 2016
  3. Justin30

    Justin30 Senior Member

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    1. Flu and vertigo Not Defined - F, S, P, BF, PEM, OI, N, Gastro Intestinal (GI)

    2. FATIGUE: weakness, paralysis

    SLEEP: wired but tired, sleep cycle shift, need sleep aids

    BRAIN FOG: bad short term memory, confusion

    IMMUNE: no symptoms

    DYSAUTONOMIA: no symptoms

    NEURO: blurred vission

    PAIN: Burning stabbing pain, achey muscle and joints

    EDOCRINE: loss of sex Drive

    GASTRO: bloating and cramps

    # of Symptoms: I have 13 regular symptoms and other unoticeable ones as well.

    3. Illness severity 1-10, 1 worst 10 best

    6 out 10

    4. Brief Explanation
    Started after a flu like illness and never recovered. I believe I have a mitochondria and neurological problem based on my symptoms.

    5. Fukuda, CCC, ICC

    I Meet all Criterias

    *please note this is not my symptom cluster just an example*
     
  4. msf

    msf Senior Member

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    Ooh, if only the EU referendum had such detailed options.

    I voted for Bacterial or Parasite Onset (it was Yersinia Enterocolitica wot did it) - Explain, so here is my explanation: I had neurological, joint (enthesitis), abdominal pains, and possibly autonomic nervous system problems for the first year or so until I changed to the FODMAP diet. This seemed to reduce what I think of as the ´Yersinia symptoms´, leaving me with just the ´general´ ME symptoms - disrupted sleep, fatigue/PEM, and GI issues.
     
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  5. msf

    msf Senior Member

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    I see I should have answered using your format - you can just put me down as Bacterial or Parasite Onset - Explain - Example F, S, PEM, GI, having started out as Bacterial or Parasite Onset - F, S, P, BF, PEM, OI, N, Gastro Intestinal (GI) (but with dysautomnia rather than OI).
     
    Justin30 likes this.
  6. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    Toronto, Canada
    Viral onset - mixed cluster

    fatigue, sleep, PEM, dysautonomia, GI. (no pain, no brain fog, only physical will cause PEM)

    6 / 10

    2 previous bouts of mild ME (8 mos, 2mos), now 18 months of mostly moderate ME.

    I've only compared my symptoms with ICC.
     
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  7. u&iraok

    u&iraok Senior Member

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    U.S.
    1. Viral Onset Defined - F, S, P, BF, PEM, OI, Neuro Symptoms (N)

    2. Name your symptom: See below.

    Please put the amount of symptoms at the end "# of Symptoms"

    Fatigue: worsened by physical exertion or stress, Activity level decreased to less than 50% of pre-illness activity level

    Sleep: Sleep disturbance, difficulty staying asleep (frequent awakenings)

    Brain fog/Cognitive: bad short term memory, poor concentration, blank stares, brain blank, confusion, loss of words, etc.

    Immune: Sensitivities to medications (unable to tolerate a “normal” dosage)Sensitivities to odors (e.g., cleaning products, exhaust fumes, colognes,hair sprays) (MCS better in summertime), Alcohol intolerance

    Dysautonomia:Shortness of breath with little or no exertion, Can only stand for short periods of time, increased thirst, frequent urination (haven't had these last two since I started on Freddd's B12 protocol a few weeks ago),

    Neuro - Brain Fog, cold hands and feet, muscle weakness, weakness of limbs, Lightheadedness, feeling”spaced out”Inability to think clearly (“brain fog”)dizziness, Noise Intolerance

    Pain: Headache, Muscle pain, neck pain,back pain--on discomfort level, no bad pain

    Endocrine: Frequent urination, Worsening of premenstrual syndrome, (PMS) (when I had PMS) Decreased libido (sex drive), hot and cold sweats

    # of symptoms: too hard to answer.

    3.Define level of severity: 6 or 7

    *Have you recovered or worsened or Relapsed and Remitted*: Got up to 80% functionality, then went back to exercising and got worse, especially neuro. Now am doing somewhat better than I was at relapse.

    4. Give a brief explanation of your illness: Started out heavy on the fatigue, immune, sleep and pain symptoms, got better, then relapsed after exercising, then more neuro symptoms.








     
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  8. Justin30

    Justin30 Senior Member

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    @u&iraok

    Great feedback.

    Any magic bullet treatments for you once the neuro sruff started?
     
  9. Old Bones

    Old Bones Senior Member

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    1. Viral Onset Mixed Cluster - F, S, P, BF, PEM, OI, N, GI

    2. Symptoms

    Fatigue: worsened by physical exertion (short intense or sustained mild), cognitive effort or stress; activity decreased to less than 30% on average, in some cases to less than 5% of pre-illness activity level; weakness, low endurance (rapid deterioration)

    Sleep: unrefreshing, insomnia, prolonged sleep including naps, frequent awakenings, awakening earlier, vivid dreams

    Pain: headaches, widespread pain in muscles, joints, myofascial, aching, burning, stinging, stabbing

    Cognitive: difficulty processing information, slowed thought, poor concentration, confusion, disorientation, overload/overwhelm, poor decision making, slowed speech, blank stares, loss of words, poor memory/recall, loss of connection between body/brain, sensory/perceptual problems

    Immune: almost total absence of colds/flu since ill, multiple sensitivities (food, medications, chemicals, scents, alcohol), allergy symptoms, mast cell issues

    Dyautonomia: orthostatic intolerance (POTS), abnormal blood pressure regulation, shortness of breath, cold extremities, extreme pallor, heart palpitations, abnormal breathing, sweating abnormalities

    Neurological - trembling, twitching, blurred vision, numbness, tingling, vertigo, tinnitus, sensitivity to light and sound, difficulty swallowing, poor coordination, skin sensitivity

    Edocorine: below-average body temperature, heat and cold intolerance, hypothyroidism, loss of appetite,
    sex drive -- what's that???

    Gastrointestinal: bloating, heartburn, alternating constipation and diarrhea, dysbiosis, leaky gut

    3. Level of severity: 3-4/10

    4. Brief explanation of your illness
    Reduced symptoms compared with early illness, but functionally more impaired. Mostly housebound. Can become nearly-bedbound without adequate pacing. No remissions, many relapses. Have never rated below a "2", or above a "4". Low endurance (PEM) is biggest limitation.

    5. Criterias Met:
    All

    Symptoms too numerous to list, and difficult to know which category to place them in, since they "overlap".
     
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  10. *GG*

    *GG* Senior Member

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    Concord, NH
    1. Viral Onset Defined - F, S, P, BF, PEM, OI, N, Gastro Intestinal (GI) (Not sure I have OI though, am having high Blood Pressure issue, 13 years into the illness)

    2. FATIGUE

    SLEEP

    BRAIN FOG

    IMMUNE

    NEURO

    PAIN

    EDOCRINE

    GASTRO

    Not sure I have OI.

    # of Symptoms

    3. Illness severity 5, 1 worst 10 best

    4. Brief Explanation
    Started after catching Mononucleosis at age 33 for first time.

    5. Fukuda, CCC, ICC
    Fukuda and ICC, perhaps CCC criteria as well?

    GG
     
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  11. wastwater

    wastwater Senior Member

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    Hypothyroidism without antibodies might be an important inclusion,dr Hyde mentions this
     
  12. halcyon

    halcyon Senior Member

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    @Justin30 What exactly do you mean by defined vs. undefined in the poll?
     
  13. Justin30

    Justin30 Senior Member

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    My bad I should have explained that:

    Defined = trigger that tested as EBV, MONO, Coxackies, Strep throat, C Diff, etc

    Undefined = trigger that happened but no test was done to determine or the tests were inconclusive. Or it was just a regular flu and your life changed.
     
  14. Justin30

    Justin30 Senior Member

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    @*GG* thank you for participating is their any sumptoms that you care too share that make up what your illness looks like?
     
  15. rosie26

    rosie26 Senior Member

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    Defined
    - Bacterial, pain.

    Undefined
    - Flu x1, mild onset - vertigo, POTS, brain fog (severe), fatigue, PEM.

    - Flu x2, severe onset - vertigo, POTS, PEM, neuro, gastro, pain, sleep dysfunction




    Fatigue: worsened by physical exertion or stress, Activity level decreased to less than 50% of pre-illness activity level

    Sleep: non-restorative sleep, difficulty falling asleep, difficulty staying asleep, severe insomnia, wired, but tired.

    Brain fog/Cognotive: bad short term memory, poor concentration, blank stares, brain blank, confusion, loss of words, etc.

    Immune: Recurrent flu-like illness, Sore throat, Hoarseness Tender lymph nodes (glands), especially in neck, groin, night sweats, Fever, cough, allergy symptoms, Sensitivities to medications (unable to tolerate a “normal” dosage)Sensitivities to odors (e.g., cleaning products, exhaust fumes, colognes,hair sprays)Sensitivities to foods,Alcohol intoleranceAlteration of taste, smell, and/or hearing, MCAS, sinsusits.

    Dyautonomia:Shortness of breath with little or no exertion, (increase BPM 30 + upon standing (have not tested for this), Can only stand for short periods of time (standing still is difficult), heart paplpatations, Chest pain burning, stabbing, dull, dry mouth, increased thirst , frequent urination, gastric emptying IBS C or D

    Neuro - Tremor or trembling (yes but not visibly), Twitching, Dysphagia, numb throat, Myclonus, blurred vision, visual disturbances of any type, headaches, neuropathic pain, numbness, tingling, burning, Brain Fog, cold hands and feet, muscle weakness, weakness of limbs, Lightheadedness, feeling”spaced out”Inability to think clearly (“brain fog”) Sensation that you might faint, Vertigo or dizziness, Numbness or tingling sensations, Photophobia (sensitivity to light) Noise Intolerance

    Pain: Headache, Tender points or trigger points, Muscle pain, Muscle pain, joint pain, internal organ pain, back pain, eye pain

    Edocorine: Frequent urination, Worsening of premenstrual syndrome, Severe weightloss or gain, hot and cold sweats

    Gastrointestinal Stomach ache; abdominal cramps, Nausea, Vomiting, Esophageal reflux (heartburn)-(only at severe onset - a few days before I collapsed) Frequent diarrhea IBS-D (mainly when severe or having a severe bout), Frequent constipation IBS-C (only since menopause), intestinal gas, Decreased appetite (when severe), Weight loss

    Edit: Not sure which system this symptom fits, but I had an intolerable poisoned feeling all throughout the body in the first few years at severe onset. I could actually feel it circulating in my blood stream.

    3.
    Define level of severity 1 to 10
    1-5 (I have had better days in some years, hence the 5)


    *Have you recovered or worsened or Relapsed and Remitted*
    4. I am a staged ME. Started out: very mild - mild - moderate - severe (here I want to add that the moderate after severe is different to the moderate before severe) - moderate - severe/moderate ( in a different way to my severe onset). So before and after are different. Not sure if I can explain that right now.

    Ex. Neurological predominantly leading to lots of Immune and GI Issues.
    Both neurological and immune causing GI. (?)
    Viral flu like illness definately immune related
    Flu-like symptoms.
    5. Define Criterias Met Fukuda, CCC and ICC only please.
    Will recheck and come back.




     
    Last edited: Jun 12, 2016
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  16. Justin30

    Justin30 Senior Member

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    rosie26 likes this.
  17. rosie26

    rosie26 Senior Member

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    @Justin30 You missed out sinusitis. It was one of the really concerning one's for me at severe.
     
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  18. justy

    justy Donate Advocate Demonstrate

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    Sorry Justin, its making me feel ill just looking at this poll - maybe another day!
     
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  19. u&iraok

    u&iraok Senior Member

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    Yes, went from not able to read or concentrate at all to able to read short amounts and my concentration is much better.

    It seems like Phosphatidylserine (PS) helped me the most.

    Also alpha glyceryl phosphoryl choline (Alpha-GPC). And l-theanine for gaba and St. John's Wort and tryptophan and 5-HTP for serotonin helped me by relaxing my brain so I could think.

    And I did Rich's Methylation protocol so I'm thinking methyl B12 (which is what I used mostly used on his protocol) and the Bs were very helpful and was taking a lot of vitamins: zinc, copper and lots of magnesium and all the minerals and trace minerals, turmeric for inflammation, melatonin and who knows what else from all the supplements and antioxidants I take.

    I don't know if the melatonin helped in and of itself or if it just helped me sleep better but I must have been very deficient in it because it did something!

    After I did Rich's Methylation, which helped me a lot in general, I really loaded up on antioxidants.
    I also eat very well, that must make some kind of difference, especially the no or very low sugar and no white flour.

    I also rested my brain and lowered my stress. The advice for the brain in general is always to exercise it but I read that with ME/CFS that's not true. I left Phoenix Rising at that time because it taxes my brain to read and post. My work stress got better and I distanced a family member who was stressing me out.

    EDIT: I also should add that at that time I started using an Ionic Foot Bath. I felt a lot better after doing the foot baths and removing toxins.
     
    Last edited: Jun 7, 2016
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  20. Little Bluestem

    Little Bluestem All Good Things Must Come to an End

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    1. Viral &/or Bacterial, Undefined - F, S, BF, PEM, N, E, I, P

    2.
    FATIGUE:
    Fatigue brought on by both physical and mental exertion. I have been ill so long it is difficult to remember, but I may do 25% of my former activity.

    SLEEP: Non-restorative sleep; vivid, and sometimes unpleasant, dreams; altered sleep cycle. While I do sleep excessively, I assume that is caused by the non-restorative nature of my sleep. I do not consider it an independent symptom.

    BRAIN FOG: Bad short term memory; bad log term memory; easily distracted; loss of words, especially nouns and most especially names. 16Jun ETA: 'Scatter-brained' would be a good way to describe me.

    PEM: Sets in more slowly and lasts longer as the disorder progresses.

    NEURO: Fumbling, dropping, stumbling, tripping; hands often ‘asleep’ on awakening; tinnitus.

    EDOCRINE: Mild hypothyroid (low active T3, high reverse T3); moderate weight gain; frequent (and urgent) urination.

    IMMUNE: Mild respiratory hypersensitivities; slightly swollen lymph nodes in neck; occasional painful lymph nodes in armpits and groin; sensitive to medications.

    PAIN: Minimal pain. Chronic tightness in shoulders and upper back; pyriformis trigger points (and maybe a few others).

    # of Symptoms: too brain-fogged to count

    3. Illness severity 1-10, 1 worst 10 best: 4 or 5

    4. Brief Explanation: Became ill following a 'nasty flu'. Almost recovered over the next few months, then began a slow, steady decline.

    5. Fukuda, CCC, ICC: I have no idea.
     
    Last edited: Jun 16, 2016
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